High-quality doctor-patient communication in end-of-life care results in better quality of life for patients. In linguistically and culturally diverse societies, language discordant consultations become daily practice, leading to difficulties in eliciting patient preferences toward end-of-life care. Although family members invariably act as informal interpreters, this may cause some ethical dilemmas. We present a case of a palliative patient whose son acted as an interpreter. This case generated a triple- layered ethical dilemma: how to safeguard patient autonomy against paternalistic interventions by (...) family members, how to respect the relational context in which patient autonomy can be realized, and how to respect the ethno-cultural values of the patient and his family. These issues are being discussed and reflected upon within the framework shared decision making involving informal- and professional interpreters. The complementary use of professional interpreters next to family members acting as informal interpreters is recommended. (shrink)

Recognition that the Principle of Respect for Autonomy fails to work in family-centric societies such as Singapore has recently led to the promotion of relational autonomy as a suitable framework within which to place healthcare decision making. However, empirical data, relating to patient and family opinions and the practices of healthcare professionals in Confucian-inspired Singapore, demonstrate clear limitations on the ability of a relational autonomy framework to provide the anticipated compromise between prevailing family decision-making norms and adopted Western led atomistic (...) concepts of autonomy. Evidence suggests that despite a growing infusion of Western influence, there is still little to indicate any major shift to individual decision making, particularly in light of the way society and healthcare are structured. Similarly, the lack of employing a shared decision-making model and data that discredit the notion that the complex psychosocial and cultural factors that affect the decision making may be considered “content neutral” not only prevents the application of relational autonomy but questions the viability of the values behind the Principle of Respect for Autonomy. Taking into account local data and drawing upon a wider concept of personhood that extends beyond prevailing family-centric ideals along with the complex interests that are focused upon the preservation of the unique nature of personhood that arises from the Ring Theory of Personhood, we propose and “operationalize” the employing of an authoritative welfare-based approach, within the confines of best interest decision making, to better meet the current care needs within Singapore. (shrink)

There has recently been interest in applying the techniques of systematic review to bioethics literature. In this paper, I identify the three models of systematic review proposed to date in bioethics: systematic reviews of empirical bioethics research, systematic reviews of normative bioethics literature, and systematic reviews of reasons. I argue that all three types yield information useful to scholarship in bioethics, yet they also face significant challenges particularly in relation to terminology and time. Drawing on my recent experience conducting a (...) systematic review, I suggest that complete comprehensiveness may not always be an appropriate goal of a literature review in bioethics, depending on the research question. In some cases, all the relevant ideas may be captured without capturing all the relevant literature. I conclude that systematic reviews in bioethics have an important role to play alongside the traditional broadbrush approach to reviewing literature in bioethics. (shrink)

Purpose Although the term “responsibility” plays a central role in bioethics and public health, its meaning and implications are often unclear. This paper defends the importance of a more systematic conception of responsibility to improve moral philosophical as well as descriptive analysis. Methods We start with a formal analysis of the relational conception of responsibility and its meta-ethical presuppositions. In a brief historical overview, we compare global-collective, professional, personal, and social responsibility. The value of our analytical matrix is illustrated by (...) sorting out the plurality of responsibility models in three cases (organ transplantation, advance directives, and genetic testing). Results Responsibility is a relational term involving at least seven relata. The analysis of the relata allows distinguishing between individual versus collective agency, retrospective versus prospective direction, and liability versus power relations. Various bioethical ambiguities result from insufficient, implicit, or inappropriate ascriptions of responsibility. Conclusions A systematic conception of responsibility is an important tool for bioethical reflection. It allows an in-depth understanding and critique of moral claims on a meta-ethical level without presuming one particular normative approach. Considering the concept of responsibility can also help to complement the current bioethical focus on individual autonomy by including the perspectives of other actors, such as family members or social groups. (shrink)

The justification for advance directives is grounded in the notion that they extend patient autonomy into future states of incompetency through patient participation in decision making about end-of-life care. Four objections challenge the necessity and sufficiency of individual autonomy, perceived to be a defining feature of liberal philosophical theory, as a basis of advance care planning. These objections are that the liberal concept of autonomy (i) implies a misconception of the individual self, (ii) entails the denial of values of social (...) justice, (iii) does not account for justifiable acts of paternalism, and (iv) does not account for the importance of personal relationships in the advance care planning process. The last objection is especially pertinent in light of recent empirical research highlighting the importance of personal relationships in advance care planning. This article examines these four objections to autonomy, and the liberal theoretical framework with which it is associated, in order to re-evaluate the philosophical basis of advance care planning. We argue that liberal autonomy (i) is not a misconceived concept as critics assume, (ii) does not entail the denial of values of social justice, (iii) can account for justifiable acts of paternalism, though it (iv) is not the best account of the value of personal relationships that arise in advance care planning. In conclusion, we suggest that liberalism is a necessary component of a theoretical framework for advance care planning but that it needs to be supplemented with theories that focus explicitly on the significance of personal relationships. (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (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)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

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

BackgroundAs part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members’ participation (...) and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning.MethodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.ResultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.ConclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences. (shrink)

Sowohl in der klinischen und rechtlichen Praxis als auch in der Medizinethik besteht Uneinigkeit darüber, was die (moralische) Verbindlichkeit von Patientenverfügungen begründet und wie mit ihnen in der Praxis zu verfahren ist. Dieser Artikel versucht, die ethisch-normative Basis von Patientenverfügungen näher zu beleuchten. Eine Bestimmung erfolgt in drei Schritten. Erstens wird analysiert, welche Autonomiekonzeption Patientenverfügungen zugrunde liegt. Patientenverfügungen, so meine These, sind Ausdruck eines relationalen, um den Aspekt der Persönlichkeit angereicherten Autonomiebegriffs. Eine moralische Verbindlichkeit ist mit dieser Analyse noch nicht (...) geklärt. Im Anschluss werden daher Argumente gesammelt, warum eine Patientenverfügung für Drittpersonen moralische Bindungskraft haben könnte. In der Achtung der Persönlichkeit sehe ich hier einen zentralen Punkt. Ob die Legitimität der in einer Patientenverfügung geäußerten Wünsche relativ zu einer bestehenden Rechtskultur, dem Allgemeinverständnis einer Gesellschaft oder der Kultur einer medizinischen Praxis ist, oder unabhängig vom soziokulturellen Kontext begründet werden kann, bleibt dabei eine offene Frage. (shrink)

Felicitas Kraemer draws on the experiences of patients undergoing deep-brain stimulation to propose two distinct and potentially conflicting principles of respect: for an individual's autonomy , and for their authenticity. I argue instead that, according to commonly-invoked justifications of respect for autonomy, authenticity is itself in part constitutive of an analysis of autonomy worthy of respect; Kraemer's argument thus highlights the shortcomings of practical applications of respect for autonomy that emphasise competence while neglecting other important dimensions of autonomy such as (...) authenticity, since it shows that competence alone cannot be interpreted as a reliable indicator of an individual's capacity for exercising autonomy. I draw from relational accounts to suggest how respect for a more expansive conception of autonomy might be interpreted for individuals undergoing DBS and in general. (shrink)

This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...) new solutions to complex ethical and regulatory questions, ranging from caring for people at the end of their lives to improving policies for organ donation and better governance of health data. It also underscores the importance of universal health care. Although a solidarity-based perspective does not require health to be seen as an individually enforceable right, it does influence our understanding of individual rights: it draws attention to how their meaning is shaped by shared social practices. I conclude by arguing that, in light of current pressures for medicine to become more personalized, using a relational understanding of personhood to shape policies and practices is a much needed endeavor. (shrink)

Notwithstanding the fact that care ethics has received increased attention, it has also faced much criticism. One of the focal points of critics is the normativity of care. Only when the objective normative basis of care is sufficiently clarified can care practices be evaluated and optimized from an ethical point of view. We emphasize that two levels of normativity can be identified: the context level and the foundational anthropology level. The personalist approach to care ethics is normatively stronger, at least (...) on one level, namely the foundational anthropology level. This personalist approach to care ethics indicates in which direction action must be taken so that human action may be considered ethically sound. (shrink)

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

In 1986, philosopher-bioethicist Samuel Gorovitz published an essay entitled “Baiting Bioethics,” in which he reported on various criticisms of bioethics that were “in print, or voiced in and around … the field” at that time, and set forth his assessment of their legitimacy. He gave detailed attention to what he judged to be the particularly fierce and “irresponsible attacks” on “the moral integrity” and soundness of bioethics contained in two papers: “Getting Ethics” by philosopher William Bennett and “Medical Morality Is (...) Not Bioethics,” coauthored by us. Gorovitz attributed some of the criticisms that bioethics was eliciting to the fact that this new, rapidly rising, and increasingly visible field had brought “scholars and practitioners together who otherwise would have little exposure to one another's disciplines. Their interactions are mutually enriching at times,” he declared, “but mutually baffling and even infuriating at other times.” In this latter regard, he suggested that “perhaps” Fox and Swazey's characterization of bioethics in the article he dissected “reflects a general revulsion at endeavors they see as inadequately like the social sciences or insufficiently respectful of them.” He went on to say that despite his objections to our “complaints” about bioethics—especially to our claim that “autonomy [had] been an unduly emphasized value” in the field—he had “a lingering sense” that there might be “a grain of truth” in them. Gorovitz ended his essay with an affirmation about the “benefit” that bioethics can derive from “responsible” and even from “irresponsible” criticism. “The unexamined discipline invites the philosopher's critical scrutiny no less than the unexamined life,” he aphoristically concluded. a. (shrink)

On September 23, 2002, the Belgian law on euthanasia came into force. This makes Belgium the second country in the world to have an act on euthanasia. Even though there is currently a legal regulation of euthanasia in Belgium, very little is known about how this legal regulation could be translated into care for patients who request euthanasia. Although euthanasia-related mortality rates in Belgium are low, ranging from 0.30% to 1.20%, it can be expected that caregivers will increasingly be confronted (...) with euthanasia requests and will, therefore, be more involved in the care for these patients. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

Despite flourishing as a multidisciplinary subject, the predominant view in bioethics today is based on Anglo-American thought. This has serious implications for a global bioethics that needs to be contextualized to local cultures and circumstances in order to be relevant. Being the largest continent on the earth, Asia is home to a variety of cultures, religions and countries of different economic statuses. While the practice of medicine in the East and West may be similar, its ethical practices do differ. Thus, (...) the Western understanding of autonomy may not be wholly applicable in the Asian setting, especially in the setting of breaking bad news, giving consent, determining best interests and deciding on end-of-life care. This article explores these topics in depth, attempting to find shared integrating factors, but at the same time arguing for a modified ethical application of autonomy, based on Asian beliefs. (shrink)

This article traces the way autonomy has become a recognised value in health care in France. In a country that based its social fundamentals on the very idea of solidarity for many years, autonomy has long been considered a foreign ‘Anglo-American principle’. Taking the example of the end-of-life debate, the article shows, however, how the use of the French term ‘accompagnement’ allowed autonomy to be redefined and to be associated with the concept of solidarity. Exploring the arguments used over the (...) past 25 years in professional guidelines, parliamentary reports, ethics committee reports, and legal texts, the authors describe the shift that took place in public and legal discourses on end-of-life care. The analysis demonstrates how the scope of autonomy has been limited by other social values, such as the protection of the dying person, in order to become an accepted social value in its own right. The example of the French end-of-life debate shows that depending on how the concept of autonomy is adapted and applied in a specific context, it can be compatible with the idea of solidarity. Such compatibility has been challenged previously in the international bioethics debate. By demonstrating the possibility of combining autonomy and solidarity, this article makes an important contribution to the international bioethics debate and to the dialogue between countries that are often perceived as significantly different. (shrink)

Dementia will soon be ranked as the world’s largest economy. At present, it ranges from the 16th to 18th place, with countries such as Indonesia, the Netherlands, and Turkey. Dementia is not only a financial challenge, but also a philosophical one. It provokes a paradigm shift in the traditional view of healthcare and expands the classic concepts of human personhood and autonomy. A promising response to these challenges is the idea of cooperative solidarity. Cooperative solidarity, contrary to its ‘humanitarian’ version, (...) promotes spontaneous teamwork and individual initiative. It obliges us not only to help 'the suffering, the troubled and the disadvantaged’, but above all to support those who already do so for spontaneous moral or affective reasons. In the field of dementia study, solidary initiatives are described within the framework of supportive care. (shrink)

Medical decision making when a patient cannot participate is complicated by the question of whose voice should be heard. The most common answer to this question is that “autonomy” is paramount, and therefore it is the voice of the unwell person that should be given priority. Advance care planning processes and practices seek to capture this sentiment and to allow treatment preferences to be documented and decision makers to be nominated. Despite good intentions, advance care planning is often deficient because (...) it is unable to facilitate a relational approach to decision making in cases when the patient’s competence is reduced. In this article we present findings from a study of the ways in which older people and their significant others understand decision making in such circumstances. Critical to the participants’ understanding was the emergent concept of “relational knowing,” a concept that is poorly articulated in the advance care planning literature. Our findings suggest that the dominant understanding of decision making in conditions of impaired competence is incomplete and obscures much of what matters to people. We conclude that, having recognized a broader set of ethical concerns, it is necessary to develop a relational and narrative based approach that applies in appropriate settings. (shrink)

Erleichtert die Konzeptualisierung der Patientenverfügung als bloßes Indiz für den mutmaßlichen Willen die notwendige Einbeziehung eines relationalen Autonomieverständnisses in eine zunehmend kulturübergreifende Bioethik? Ich lege dar, dass die Berücksichtigung relationaler Autonomiekonzepte kein überzeugendes Argument für die Bestimmung der Patientenverfügung als bloßes Indiz für den mutmaßlichen Willen ist, sondern vielmehr – neben einer Reihe anderer Argumente – für die Patientenverfügung als verbindliche Willensbekundung spricht. Diese erweist sich als flexibel genug, um unterschiedlichen Formen von Autonomie gerecht zu werden.

The Aristotelian‐Thomist philosopher holds that human intellectual knowledge is possible because of the order in the world and natural human capacities. It is the position of this paper that there is a shared human form or nature that unites all humanity as members of the same kind. Moral treatment is due to every human being because they are human, and is not based upon expression of abilities. Humans have substantial dynamic existence in the world, an existence which overflows in expressive (...) relationships. As both patient and health professional are human, human nature forms the natural foundation of health care. This paper looks towards human nature for moral guidance. The therapeutic relationship is seen as a part of the interpersonal moral space formed by human relationality, which tends towards community – in this case, the healthcare system. The therapeutic relationship is also a source of moral responsibility, as illness makes the patient vulnerable, while knowledge and nursing capacities generate in the nurse a duty to care. Nursing theory serves to connect philosophical reflection and nursing practice. Imogene King's conceptual system and theory of Goal Attainment is the theory that follows from the perspective of human person being presented. This synthesis of philosophy and theory is developed with the goal of shedding light on healthcare decisions in palliative care. The article concludes with the acknowledgement that the complexity of contextualized individual decisions requires the insight and discipline of the moral practitioner, and provides some thoughts on how education, development, and refinement transform an individual into a nurse. (shrink)

Western philosophy has been powerfully influenced by a paradigm of personal agency that is linked to an individualistic conception of autonomy. This essay contrasts this conception with an alternative understanding that recognizes a social component built into the very meaning of autonomy. After reviewing feminist critiques of the dominant conception of autonomy, I develop the broad outlines of a relational view and apply this reconceptualization to a concrete situation in order to show how this altered view reconfigures understanding of the (...) participants' relationships and each of their personal perspectives. The situation chosen, physician‐assisted suicide, is intended principally to illustrate one respect in which a relational conception of autonomy reframes a controversial moral issue and reveals perspectives toward it that are likely to be obscured when autonomy is viewed through the lens of the dominant individualistic conception. My principal aim is to show that when autonomy is understood relationally, respecting others' autonomy is likely to be a far more complex issue than is apparent within the standard conception, both for those with professional responsibilities and often for personal intimates as well. (shrink)

Competent patients’ refusals of nursing care do not yet have the legal or ethical standing of refusals of life-sustaining medical therapies such as mechanical ventilation or blood products. The case of a woman who refused turning and incontinence management owing to pain prompted us to examine these situations. We noted several special features: lack of paradigm cases, social taboo around unmanaged incontinence, the distinction between ordinary versus extraordinary care, and the moral distress experienced by nurses. We examined this case on (...) the merits and limitations of five well-known ethical positions: pure autonomy, conscientious objection, paternalism, communitarianism, and feminism. We found each lacking and argue for a ‘negotiated reliance’ response where nurses and others tread as lightly as possible on the patient’s autonomy while negotiating a compromise, but are obligated to match the patient’s sacrifice by extending themselves beyond their usual professional practice. (shrink)

Amongst traditionally-available frameworks within which end-of-life decisions in Intensive Care Units (ICU) are situated, we favour Ordinary versus Extra-ordinary care distinctions as the most helpful. Predicated on this framework, we revisit the concepts of personhood and autonomy. We argue that a full account of personhood locates its foundation in relationships with others, rather than merely in “rationality”. A full account of autonomy also recognises relationships with others, as well as the actual reality of the patient’s situation-in-the-world. The fact that, when (...) critically ill, the patient may no longer be able to take an active role in decision-making does not bring about the end of their personhood, or of their autonomy. Because the patient’s autonomy is intimately linked to their relationships with others, once critical illness supervenes, respect for their autonomy devolves to those others with whom the patient is in relationship. In practical application, this means that there must be a dialogue, as the end-of-life of the critically-ill patient in ICU comes into view. Such dialogue should be grounded on this understanding in order to conform best to moral philosophical principles. Ideally the dialogue will involve all those with whom the patient is in relationship and, practical difficulties within an ICU notwithstanding, will aim to be inclusive, non-coercive and reflective as it seeks to maximise the good of the patient in their unique context. (shrink)

Conflicts between bioethicists and disability theorists often arise over the permissibility of euthanasia and physician assisted suicide. Where mainstream bioethicists propose universalist guidelines that will direct action across a range of effectively disembodied situations, and take for granted that moral agency requires autonomy, feminist bioethicists demand a contextualisation of the circumstances under which moral decision making is conducted, and stress a more relational view of autonomy that does not require strict standards of independent agency. Nonetheless, neither traditional nor feminist perspectives (...) have fully engaged with the critique of disabled people that they are consistently subjected to discriminatory, even life-threatening, practice and policy in biomedical and health care. The paper revisits some of the issues that drive the often highly polarised debate between bioethicists and disability theorists around the question of end of life decisions involving disabled people. While many bioethicists have doubtless been indifferent to the difference that disability makes, I am also concerned that the very proper demand of disability activists and theorists to scrutinise all end of life decisions for signs of discrimination and even violence has segued into something damagingly restrictive that silences internal dissension and stifles external debate. Given that euthanasia and physician assisted suicide may be issues where conventional argument on either side will founder on deeply felt convictions, I make the radical move to speculate on an entirely different, quasi-Deleuzian, approach to the value of life in order to shake up entrenched positions, and begin to think differently. (shrink)

Ein gelungenes Arzt-Patient-Verhältnis, das auf gegenseitigem Vertrauen und ärztlicher Verantwortung basiert, ist ein zentraler Bestandteil des Ideals der ärztlichen Profession. Aktuell wird vielfach von einem neuen „ökonomischen Paradigma“ in der Medizin gesprochen, das dieses Verhältnis vermeintlich unterminiert. Als ein wichtiges Merkmal dieses Paradigmas gilt das Verständnis vom Patienten als Kunden, der charakterisiert ist durch seine Selbstbestimmung bzw. Autonomie. Wie stellt sich die Kundenrolle nun aber bei vulnerablen Patientengruppen dar, die in ihrer Autonomie eingeschränkt sind, und was bedeutet dies wiederum für (...) das Arzt-Patient-Verhältnis? In dem vorliegenden Artikel wollen wir deshalb die Fragestellung verfolgen, ob sich ärztliche Verantwortung bzw. das Arzt-Patient-Verhältnis ändert, wenn sich der (vulnerable) Patient als Kunde begreift. Als Analysesetting dient die Palliativmedizin, da sie als Beispiel für eine besonders vulnerable Patientengruppe gelten kann. Als Basis der Argumentation werden die Ergebnisse einer qualitativen Studie herangezogen, welche die Einstellungen von Palliativpatienten zum Thema „der Patient als Kunde“ erhob sowie der Frage nachging, ob sich Palliativpatienten, speziell im Rahmen von medizinischen Entscheidungen, als selbstbestimmt begreifen. Die Studienergebnisse zeigen, dass Autonomie relational verstanden werden muss und dem Arzt eine entscheidende Rolle in der Ermöglichung von Patientenselbstbestimmung zukommt – ganz unabhängig von der Selbstattribuierung der Befragten als Kunde oder Patient. Anschließend werden diese Ergebnisse dahingehend analysiert, ob sie als Ausdruck einer Veränderung des Arzt-Patient-Verhältnisses und der ärztlichen Verantwortung gegenüber den Patienten zu werten sind. Hieraus folgernd wird nach den praktischen Implikationen für das Arzt-Patient-Verhältnis auf der Grundlage der „Ethics of Care“ gefragt sowie auf die individuelle Betreuungsnotwendigkeit, speziell von vulnerablen Patientengruppen, verwiesen. (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)

The Roman Catholic theological approach to euthanasia is radically prohibitive. The main theological argument for this prohibition is the so-called “stewardship argument”: Christians cannot escape accounting to God for stewardship of the bodies given them on earth. This contribution presents an alternative approach based on European existentialist and philosophical traditions. The suggestion is that exploring the fullness of our relational responsibility is more apt for a pluralist – and even secular – debate on the legitimacy of euthanasia.

STAJDUHAR K, FUNK L, JAKOBSSON E and ÖHLÉN J. Nursing Inquiry 2010; 17: 221–230A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care-givingTraditionally viewed as in opposition to palliative care, newer ideas about ‘health-promoting palliative care’ increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision-making. The general tendency is to assume that empowerment, participation, and self-care are universally beneficial for and welcomed by all individuals. (...) But does this assumption hold for everyone, and do we fully understand the implications of health-promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of ‘family empowerment’ strategies in palliative home-care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical-care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of ‘family empowerment’ are explored in this regard. ‘Family empowerment’ approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers. (shrink)

Advance Care Planning was introduced as a means of empowering individuals to make informed decisions regarding their health and end-of-life care. It is a way for individuals to contemplate their own personal values and to exercise autonomy. However, there is reason to believe that ACP may not be widely taken up and when adopted, may not be applied as intended. The ethical challenges facing ACP need careful study. This essay focuses on two problematic ethical aspects of ACP: 1. a strict (...) adherence to procedural formalism, 2. an over-emphasis on individualistic autonomy, which can lead to hindrances in its implementation. These may explain both the low uptake as well as its ineffectiveness. ACP should not be a compliance exercise and implementers will need to think hard about when and how to implement ACP, given cultural and perceptual sensitivities. By discussing the concept of “narrativism” and “relational autonomy”, we provide an avenue for solving the dilemmas faced and present a scenario that is closer to the ideal of what the ACP framework hopes to achieve. This would include patient preference as well as best interest and family values. An increased uptake of ACP will be a useful health service delivery indicator, but this [End Page 53] would also entail developing a more morally mindful and just society in a broader sense. (shrink)