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)

BackgroundRespect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative (...) care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.Main bodyHere, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.ConclusionThis article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices. (shrink)

Starting from two observations regarding nursing ethics research in the past two decades, namely, the dominant influence of both the empirical methods and the principles approach, we present the cornerstones of a foundational argument-based nursing ethics framework. First, we briefly outline the general philosophical–ethical background from which we develop our framework. This is based on three aspects: lived experience, interpretative dialogue, and normative standard. Against this background, we identify and explore three key concepts—vulnerability, care, and dignity—that must be observed in (...) an ethical approach to nursing. Based on these concepts, we argue that the ethical essence of nursing is the provision of care in response to the vulnerability of a human being in order to maintain, protect, and promote his or her dignity as much as possible. (shrink)

BackgroundVulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this (...) gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept.MethodsUsing PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, Embase®, Web of Science™, and Philosopher’s Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology.ResultsThirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults’ vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults’ vulnerability: understanding older adults’ vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures.ConclusionsThe way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human. (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)

: Discussions of ethical approaches in nursing have been much enlivened in recent years, for instance by new developments in the theory of care. Nevertheless, many ethical concepts in nursing still need to be clarified. The purpose of this contribution is to develop a fundamental ethical view on nursing care considered as moral practice. Three main components are analyzed more deeply--i.e., the caring relationship, caring behavior as the integration of virtue and expert activity, and "good care" as the ultimate goal (...) of nursing practice. For the development of this philosophical-ethical interpretation of nursing, we have mainly drawn on the pioneering work of Anne Bishop and John Scudder, Alasdair MacIntyre, Lawrence Blum, and Louis Janssens. We will also show that the European philosophical background offers some original ideas for this endeavor. (shrink)

To generate empathy in the care of vulnerable older persons requires care providers to reflect critically on their care practices. Ethics education and training must provide them with tools to accomplish such critical reflection. It must also create a pedagogical context in which good care can be taught and cultivated. The care-ethics lab ‘sTimul’ originated in 2008 in Flanders with the stimulation of ethical reflection in care providers and care providers in training as its main goal. Also in 2008, sTimul (...) commenced the organization of empathy sessions as an attempt to achieve this goal by simulation. The empathy session is a practical and fairly straightforward way of working to provoke care providers and care providers in training to engage in ethical reflection. Characteristic of the empathy session in the care-ethics lab is the emphasis on experience as a basis for ethical reflection. (shrink)

The aim of this study was to report the results of a literature review of empirical studies on trust within the nurse–patient relationship. A search of electronic databases yielded 34 articles published between 1980 and 2011. Twenty-two studies used a qualitative design, and 12 studies used quantitative research methods. The context of most quantitative studies was nurse caring behaviours, whereas most qualitative studies focused on trust in the nurse–patient relationship. Most of the quantitative studies used a descriptive design, while qualitative (...) methods included the phenomenological approach, grounded theory, ethnography and interpretive interactionism. Data collection was mainly by questionnaires or interviews. Evidence from this review suggests that the development of trust is a relational phenomenon, and a process, during which trust could be broken and re-established. Nurses’ professional competencies and interpersonal caring attributes were important in developing trust; however, various factors may hinder the trusting relationship. (shrink)

The purpose of this article is to explore a fundamental ethical approach to nursing and to suggest some proposals, based on this approach, for nursing ethics education. The major point is that the kind of nursing ethics education that is given reflects the theory that is held of nursing. Three components of a fundamental ethical view on nursing are analysed more deeply: (1) nursing considered as moral practice; (2) the intersubjective character of nursing; and (3) moral perception. It is argued (...) that the fundamental ethical view on nursing goes together with a virtue ethics approach. Suggestions are made for the ethics education of nurses. In particular, three implications are considered: (1) an attitude versus action-orientated ethics education; (2) an integral versus rationalistic ethics education; and (3) a contextual model of ethics education. It will also be shown that the European philosophical background offers some original ideas for this endeavour. (shrink)

Providing good care requires nurses to reflect critically on their nursing practices. Ethics education must provide nurses with tools to accomplish such critical reflection. It must also create a pedagogical context in which a caring attitude can be taught and cultivated. To achieve this twofold goal, we argue that the principles of a right-action approach, within which nurses conform to a number of minimum principles, must be integrated into a virtue ethics approach that cultivates a caring attitude. Ethics education that (...) incorporates both the `critical companionship' method and the use of codes of ethics contributes positively to cultivating critical reflection by nurses. (shrink)

DINÇ L and GASTMANS C. Nursing Inquiry 2012; 19: 223–237 Trust and trustworthiness in nursing: an argument‐based literature reviewCaring requires nurses to establish trusting relationships with patients and to be trustworthy professionals. This article provides insight into the conceptual understanding of trust and trustworthiness in nursing through an argument‐based literature review of 17 articles published between 1980 and 2010. Trust is characterized as an attitude relying with confidence on someone. The importance of trust relationships is considered by addressing the imbalances (...) of power in nurse–patient relationships as they increase the vulnerability and dependency of the truster. Trust is considered as a process, and time, reliance on others, risk and fragility are identified as basic attributes of trust. However, trustworthiness is inadequately explored in the nursing ethics literature. Nurse educators have a responsibility to ensure that nurses are equipped with the attitudes and knowledge that are needed to establish trusting nurse–patient relationships. (shrink)

Different embodiments of technology permeate all layers of public and private domains in society. In the public domain of aged care, attention is increasingly focused on the use of socially assistive robots supporting caregivers and older adults to guarantee that older adults receive care. The introduction of SARs in aged-care contexts is joint by intensive empirical and philosophical research. Although these efforts merit praise, current empirical and philosophical research are still too far separated. Strengthening the connection between these two fields (...) is crucial to have a full understanding of the ethical impact of these technological artefacts. To bridge this gap, we propose a philosophical-ethical framework for SAR use, one that is grounded in the dialogue between empirical-ethical knowledge about and philosophical-ethical reflection on SAR use. We highlight the importance of considering the intuitions of older adults and their caregivers in this framework. Grounding philosophical-ethical reflection in these intuitions opens the ethics of SAR use in aged care to its own socio-historical contextualisation. Referring to the work of Margaret Urban Walker, Joan Tronto and Andrew Feenberg, it is argued that this socio-historical contextualisation of the ethics of SAR use already has strong philosophical underpinnings. Moreover, this contextualisation enables us to formulate a rudimentary decision-making process about SAR use in aged care which rests on three pillars: stakeholders’ intuitions about SAR use as sources of knowledge; interpretative dialogues as democratic spaces to discuss the ethics of SAR use; the concretisation of ethics in SAR use. (shrink)

ObjectiveTo present (1) the ethical concepts related to the debate on resuscitation of extremely premature infants (EPIs) as they are described in the ethical literature; and (2) the ethical arguments based on these concepts.DesignWe conducted a systematic review of the ethical literature. We selected articles based on the following predefined inclusion/exclusion criteria: (1) English language articles (2) presenting fully elaborated ethical arguments (3) on resuscitation (4) of EPIs, that is, infants born before 28 weeks of gestation.AnalysisAfter repeated reading of articles, (...) we developed individual summaries, conceptual schemes and an overall conceptual scheme. Ethical arguments and concepts were identified and analysed.ResultsForty articles were included out of 4709 screened. Personhood, best interest, autonomy and justice were concepts grounding the various arguments. Regarding these concepts, included authors agreed that the best interest principle should guide resuscitation decisions, whereas justice seemed the least important concept. The arguments addressed two questions: Should we resuscitate EPIs? Who should decide? Included authors agreed that not all EPIs should be resuscitated but disagreed on what criteria should ground this decision. Overall, included authors agreed that both parents and physicians should contribute to the decision.ConclusionsThe included publications suggest that while the best interest is the main concept guiding resuscitation decisions, justice is the least important. The included authors also agree that both parents and physicians should be actively involved in resuscitation decisions for EPIs. However, our results suggest that parents’ decision should be over-ridden when in contrast with the EPI’s best interest. (shrink)

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid (...) total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

Socially Assistive Robots are increasingly conceived as applicable tools to be used in aged care. However, the use carries many negative and positive connotations. Negative connotations come forth out of romanticized views of care practices, disregarding their already established technological nature. Positive connotations are formulated out of techno-deterministic views on SAR use, presenting it as an inevitable and necessary next step in technological development to guarantee aged care. Ethical guidance of SAR use inspired by negative connotations tends to be over-restrictive (...) whereas positive connotations tend to provide over-permissive guidance. To avoid these extremes, we report on the development and content of 21 ethical orientations regarding SAR use in aged care. These orientations resulted from a multi-phased project, which consisted of empirical-ethical research focusing on older adults’ intuitions regarding SAR use and philosophical-ethical research focusing on philosophical-ethical argumentations regarding SAR use. This project led to the Socio-historical contextualization of the ethics of SAR use, in which the ethical impact of SAR use is localized on three interrelated analysis levels: societal, organizational, and individual-relational. The 21 novel orientations regarding SAR use are structured according to these levels and further categorized into foundational and applied orientations. The first category leads to critical reflection on SAR use while the latter category inspires decision-making processes regarding this use. While going beyond the care-romantic and techno-deterministic gaze of SAR use in aged care, the described orientations balance themselves between their over-restrictiveness and over-permissiveness. (shrink)

The concept of care can be explained in various ways, and it can present a different meaning to each person. Nurses are increasingly aware that good nursing care consists of ‘more’ than the competent performance of a number of caring activities. For many nurses it is less clear what this ‘more’ means and what importance it has in nursing. This article will develop a view concerning care considered as a moral attitude. It is argued that care can be considered as (...) a foundational normative concept in the ethics of the nursing profession. The aim is to clarify that nurses do not derive their specific caring identity just from the set of tasks that they perform but also from the way in which they commit themselves to the caring process. (shrink)

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

Background: The 21-item Nurses’ Moral Courage Scale was developed and validated in 2018 in Finland with the purpose of measuring moral courage among nurses. Objectives: The objective of this study was to make a Dutch translation of the Nurses’ Moral Courage Scale to describe the level of nurses’ self-assessed moral courage and associated socio-demographic factors in Flanders, Belgium. Research design: A forward–backward translation method was applied to translate the English Nurses’ Moral Courage Scale to Dutch, and a pilot study was (...) conducted to improve readability and understandability. A non-experimental, descriptive cross-sectional exploratory design was used to conduct a survey. Descriptive analysis was used. Participants: The data were collected from a convenience sample of 559 nurses from two hospitals in Flanders. Ethical considerations: Ethical approval was obtained from the university ethics committee, permission to conduct the study was obtained from the participating hospitals. Participants received a guide letter and gave their informed consent. Findings: The readability and understandability of the Dutch Nurses’ Moral Courage Scale were positively evaluated, and the scale revealed a good level of internal consistency for the total scale and all subscales. Nurses’ mean score of the 21-item Nurses’ Moral Courage Scale was 3.77. The total Nurses’ Moral Courage Scale score was associated with age, experience, professional function, level of education and personal interest. Discussion and Conclusion: The Nurses’ Moral Courage Scale was successfully translated to Dutch. The Flemish nurses perceived themselves as morally courageous, especially when they were in a direct interpersonal relationship with their patients. Acting courageously in ethical dilemmas that involved other actors or organizations appeared to be more challenging. The results strongly suggest the important role of education and ethical leadership in developing and supporting this essential virtue in nursing practice. (shrink)

Volume 19, Issue 10, October 2019, Page 3-7.

BackgroundThere has been no in-depth research of public attitudes on withholding or withdrawing life-prolonging treatment, euthanasia, assisted suicide and physician assisted suicide in Croatia. The aim of this study was to examine these attitudes and their correlation with sociodemographic characteristics, religion, political orientation, tolerance of personal choice, trust in physicians, health status, experiences with death and caring for the seriously ill, and attitudes towards death and dying. MethodsA cross-sectional study was conducted on a three-stage random sample of adult citizens of (...) the Republic of Croatia, stratified by regions, counties, and locations within those counties. In addition to descriptive statistics, ANOVA and Chi-square tests were used to determine differences, and factor analysis, correlation analysis and multiple regression analysis for data analysis.Results38.1% of the respondents agree with granting the wishes of dying people experiencing extreme and unbearable suffering, and withholding life-prolonging treatment, and 37.8% agree with respecting the wishes of such people, and withdrawing life-prolonging treatment. 77% of respondents think that withholding and withdrawing procedures should be regulated by law because of the fear of abuse. Opinions about the practice and regulation of euthanasia are divided. Those who are younger and middle-aged, with higher levels of education, living in big cities, and who have a more liberal worldview are more open to euthanasia. Assisted suicide is not considered to be an acceptable practice, with only 18.6% of respondents agreeing with it. However, 40.1% think that physician assisted suicide should be legalised. 51.6% would support the dying person’s autonomous decisions regarding end-of-life procedures.ConclusionsThe study found low levels of acceptance of withholding or withdrawing life-prolonging treatment, euthanasia, assisted suicide and physician assisted suicide in Croatia. In addition, it found evidence that age, level of education, political orientation, and place of residence have an impact on people’s views on euthanasia. There is a need for further research into attitudes on different end-of-life practices in Croatia. (shrink)

This article gives an overview of the nursing ethics arguments on euthanasia in general, and on nurses' involvement in euthanasia in particular, through an argument-based literature review. An in-depth study of these arguments in this literature will enable nurses to engage in the euthanasia debate. We critically appraised 41 publications published between January 1987 and June 2007. Nursing ethics arguments on (nurses' involvement in) euthanasia are guided primarily by the principles of respect for autonomy, nonmaleficence, beneficence and justice. Ethical arguments (...) related to the nursing profession are described. From a care perspective, we discuss arguments that evaluate to what degree euthanasia can be considered positively or negatively as a form of good nursing care. Most arguments in the principle-, profession- and care-orientated approaches to nursing ethics are used both pro and contra euthanasia in general, and nurses' involvement in euthanasia in particular. (shrink)

This article provides an overview of the scarce international literature concerning nurses’ attitudes to euthanasia. Studies show large differences with respect to the percentage of nurses who are in favour of euthanasia. Characteristics such as age, religion and nursing specialty have a significant influence on a nurse’s opinion. The arguments for euthanasia have to do with quality of life, respect for autonomy and dissatisfaction with the current situation. Arguments against euthanasia are the right to a good death, belief in the (...) possibilities offered by palliative care, religious objections and the fear of abuse. Nurses mention the need for more palliative care training, their difficulties in taking a specific position, and their desire to express their ideas about euthanasia. There is a need to include nurses’ voices in the end-of-life discourse because they offer a contextual understanding of euthanasia and requests to die, which is borne out of real experience with people facing death. (shrink)

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

In recent approaches to ethics, the personal involvement of health care providers and their empathy are perceived as important elements of an overall ethical ability. Experiential working methods are used in ethics education to foster, inter alia, empathy. In 2008, the care-ethics lab ‘sTimul’ was founded in Flanders, Belgium, to provide training that focuses on improving care providers' ethical abilities through experiential working simulations. The curriculum of sTimul focuses on empathy sessions, aimed at care providers' empathic skills. The present study (...) provides better insight into how experiential learning specifically targets the empathic abilities of care providers. Providing contrasting experiences that affect the care providers' self-reflection seems a crucial element in this study. Further research is needed to provide more insight into how empathy leads to long-term changes in behaviour. (shrink)

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid (...) total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

This article provides an overview of the scarce international literature concerning nurses’ attitudes to euthanasia. Studies show large differences with respect to the percentage of nurses who are (not) in favour of euthanasia. Characteristics such as age, religion and nursing specialty have a significant influence on a nurse’s opinion. The arguments for euthanasia have to do with quality of life, respect for autonomy and dissatisfaction with the current situation. Arguments against euthanasia are the right to a good death, belief in (...) the possibilities offered by palliative care, religious objections and the fear of abuse. Nurses mention the need for more palliative care training, their difficulties in taking a specific position, and their desire to express their ideas about euthanasia. There is a need to include nurses’ voices in the end-of-life discourse because they offer a contextual understanding of euthanasia and requests to die, which is borne out of real experience with people facing death. (shrink)

The aim of this study was to explore how Belgian nurses view issues related to the development, dissemination and implementation of a code of ethics for nurses. Fifty nurses took part in eight focus groups. The participants stated that, on the whole, a code of ethics for nurses would be useful. They stressed that a code should be a practical and useful instrument developed by nurses for nurses, and that it should be formulated and presented in a practical way, just (...) as educational courses dealing specifically with codes of ethics require a practical approach to be effective. They emphasized that the development of a code should be an ongoing process, enabling nurses to provide input as they reflect on the ethical issues dealt with in the code and apply the code in their practice. Finally, they stressed the need for support at institutional level for the effective implementation of a code. (shrink)

In current Western societies, increasing numbers of people express their desire to choose when to die. Allowing people to choose the moment of their death is an ethical issue that should be embedded in sound clinical and legal frameworks. In the case of persons with dementia, it raises further ethical questions such as: Does the person have the capacity to make the choice? Is the person being coerced? Who should be involved in the decision? Is the person’s suffering untreatable? The (...) use of Advance Euthanasia Directives (AED) is suggested as a way to deal with end-of-life wishes of persons with dementia. However, in the Netherlands—the only country in which this practice is legal—the experiences of patients, doctors, and relatives have been far from satisfactory.Our paper analyses this complex ethical challenge from a Dignity-Enhancing Care approach, starting from the Dutch experiences with AED as a case. We first consider the lived experiences of the different stakeholders, seeking out a dialogical-interpretative understanding of care. We aim to promote human dignity as a normative standard for end-of-life care practices. Three concrete proposals are then presented in which this approach can be operationalised in order to deal respectfully with the end-of-life choices of persons with dementia. (shrink)

This article discusses findings from a mixed method literature review that investigated cancer patients’ perceptions of what constitutes a good nurse. To find pertinent articles, we conducted a systematic key word search of five journal databases (1998—2008). The application of carefully constructed inclusion criteria and critical appraisal identified 12 relevant articles. According to the patients, good nurses were shown to be characterized by specific, but inter-related, attitudes, skills and knowledge; they engage in person-to-person relationships, respect the uniqueness of patients, and (...) provide support. Professional and trained skills as well as broad and specific nursing and non-nursing knowledge are important. The analysis revealed that these characteristics nurtured patient well-being, which manifests as optimism, trust, hope, support, confirmation, safety and comfort. Cancer patients’ perceptions of what constitutes a good nurse represent an important source of knowledge that will enable the development of more comprehensive and practice-based views on good nursing care for such patients. These perceptions help us to understand how nurses effectively make a difference in cancer patient care. (shrink)

Since Carol Gilligan's In a Different Voice (1982) the ethics of care has developed as a movement of allied thinkers, in different continents, who have a shared concern and who reflect on similar topics. This shared concern is that care can only be revalued and take its societal place if existing asymmetrical power relations are unveiled, and if the dignity of care givers and care receivers is better guaranteed, socially, politically and personally. In this first volume of a new series (...) leading care ethicists from Europe and the United States focus on the moral significance of two concepts in the debate that ask for further reflection. In discussion with the work of Axel Honneth on recognition and the work of Emmanuel Housset on compassion a contribution is made to a reconsideration of recognition and compassion from an ethics of care perspective. This volume contains contributions by Andries Baart, Estelle Ferrarese, Chris Gastmans, Mieke Grypdonck, Emmanuel Housset, Carlo Leget, Hilde Lindemann, Axel Liegeois, Christa Schnabl, Joan C. Tronto, Annelies van Heijst, Linus Vanlaere, Frans Vosman and Margaret Urban Walker. (shrink)

In her article Reification and assent in research involving those who lack capacity, Anna Smajdor shows how excluding adults with impairments of capacity (AWICs) to protect them from the risks of medical research has the paradoxical effect of harming them by reifying them.1 While the medical risks of excluding vulnerable populations in general from medical research are well known, the main risk being the creation of therapeutic orphans, the risk of reifying these populations is less discussed. Hence, we commend Smajdor (...) for introducing an essential nuance in the debate on inclusion of AWICs in medical research. We also agree with her on the importance of acquiring assent from those who cannot legally consent rather than automatically excluding them from research, as we already do in paediatric research. However, we believe that she fails to acknowledge some practical challenges already observed in paediatric research that hinder the retrieval of assent from AWICs and, consequently, their inclusion in medical research. In this commentary, we will first introduce the main challenge to using assent to include AWICs in research, that is, the fact that individuals might oscillate within the capacity spectrum. We will then provide other examples of practical obstacles to the inclusion of AWICs …. (shrink)

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

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

In their practice, nurses make daily decisions that are ethically informed. An ethical decision is the result of a complex reasoning process based on knowledge and experience and driven by ethical values. Especially in acute elderly care and more specifically decisions concerning the use of physical restraint require a thoughtful deliberation of the different values at stake. Qualitative evidence concerning nurses’ decision-making in cases of physical restraint provided important insights in the complexity of decision-making as a trajectory. However a nuanced (...) and refined understanding of the reasoning process in terms of ethical values is still lacking. A qualitative interview design, inspired by the Grounded Theory approach, was carried out to explore nurses’ reasoning process in terms of ethical values. We interviewed 21 acute geriatric nurses from 12 hospitals in different regions in Flanders, Belgium in the period October 2009–April 2011. The Qualitative Analysis Guide of Leuven was used to analyse interview data. Nurses’ decision-making is characterized as an ethical deliberation process where different values are identified and where the process of balancing these values forms the essence of ethical deliberation. Ethical decision-making in cases of physical restraint implies that nurses have to choose which values receive priority in the process, which entails that not all values can be respected to the same degree. As a result, decision making can be experienced as difficult, even as a dilemma. Driven by the overwhelming goal of protecting physical integrity, nurses took into account the values of dignity and justice more implicitly and less dominantly. (shrink)

BackgroundDeciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs.MethodsWe conducted a qualitative study in Belgium, following a constructivist account of the Grounded Theory. We conducted 20 in-depth, face-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven.ResultsThe main principles guiding participants’ decision-making were EPIs’ best interest and respect for parents’ autonomy. Participants agreed that justice as resource allocation (...) should not be considered in resuscitation decision-making. The main ethical challenge for participants was dealing with the conflict between EPIs’ best interest and respect for parents’ autonomy. This conflict was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants’ coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress.ConclusionsParticipants’ clinical–ethical reasoning for resuscitation of EPIs can be mainly characterized as an attempt to balance EPIs’ best interest and respect for parents’ autonomy. This approach could explain why neonatologists considered conflicts between these principles as their main ethical challenge and why lack of resolution increases the risk of moral distress. Therefore, more research is needed to better understand moral distress in EPI resuscitation decisions.Clinical Trial Registration: The study received ethical approval from the ethics committee of UZ/ku Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accordance with the General Data Protection Regulation of 25 May 2018. (shrink)

The need for dignity is frequently mentioned in policy documents relating to the care of the elderly. It is also described as an important value in professional codes. Yet concerns about the standards of care for an important number of elderly people abound, despite global ageing being a challenging phenomenon. Not least among these is how to ensure that the elderly will be able to live out their days with dignity.In the present paper, we begin with an empirical exploration of (...) the meaning of human dignity as experienced by older Europeans and their professional caregivers. Thereafter, we discuss the meaning and relevance of these empirical research findings from a care ethics perspective. (shrink)

The COVID-19 pandemic has had, and still has, the risk to have an enormous impact on how people socially interact with each other due to possible lockdowns, quarantine and isolation measures to reduce infection rates. Consequently, these measures hold great implications for those medical disciplines that inherently rely on social interaction, such as psychiatry. In their article, ‘Can you hear me?’— Communication, Relationship and Ethics in Video-based Telepsychiatric Consultations’, Frittgen and Haltaufderheide1 show that videoconferencing holds potential to ensure that this (...) social interaction is guaranteed, be it in a technology mediated manner. In this sense, videoconferencing needs to be conceived as a pharmakon, a medicine, having both curative and toxifying elements, depending on why and how it is used.2 For example, videoconferencing allows continuity of care when physical proximity is impossible. At the same time, it allows the patient to interrupt the therapy by muting the therapist or ending the call at his/her convenience. To guarantee the curative side of videoconferencing, and as such avoid the toxifying elements, an ethical prescription needs to be developed and used. Despite the fact that videoconferencing seems to have a similar clinical effectiveness as face-to-face interaction, Frittgen and Haltaufderheide rightly point out that there are ethical impacts to be addressed to avoid …. (shrink)

Our study provides a review of argument-based scientific literature to address conscientious objections to end-of-life procedures. We also proposed a taxonomy based on this study that might facilitate clarification of this discussion at a basic level. The three clusters of our taxonomy include (1) nonconventional compatibilists that claim that conscientious objection against morally repugnant social conventions is compatible with professional obligation, (2) conventional compatibilists that suggest that conscientious objection against social convention is permissible under certain terms of compromise, and (3) (...) conventional incompatibilists that aver that conscientious objection is incompatible with the privileges and obligations of a health care provider. We conclude with three moments of reflective pause. The first pause reflects on the question of the health of a society's pluralism. The second pause results in suggested practice guidelines for conscientious objection to facilitate cooperation. The final pause reveals the need for further research to uncover a global perspective. (shrink)

The aim of this study was to explore and describe how Flemish nurses experience their involvement in the care of hospitalized patients with dementia, particularly in relation to artificial nutrition or hydration (ANH). We interviewed 21 hospital nurses who were carefully selected from nine hospitals in different regions of Flanders. ‘Being touched by the vulnerability of the demented patient’ was the central experience of the nurses, having great impact on them professionally as well as personally. This feeling can be described (...) as encompassing the various stages of the care process: the nurses' initial meeting with the vulnerable patient; the intense decision-making process, during which the nurses experienced several intense emotions influenced by supporting or hindering contextual factors; and the final coping process, a time when nurses came to terms with this challenging experience. From our examination of this care process, it is obvious that nurses' involvement in ANH decision-making processes that concern patients with dementia is a difficult and ethically sensitive experience. On the one hand, the feeling of ‘being touched’ can imply strength, as it demonstrates that nurses are willing to provide good care. On the other hand, the feeling of ‘being touched’ can also imply weakness, as it makes nurses vulnerable to moral distress stemming from contextual influences. Therefore, nurses have to be supported as they carry out this ethically sensitive assignment. Practical implications are given. (shrink)

The aim of this study was to explore and describe how Flemish nurses experience their involvement in the care of hospitalized patients with dementia, particularly in relation to artificial nutrition or hydration (ANH). We interviewed 21 hospital nurses who were carefully selected from nine hospitals in different regions of Flanders. ‘Being touched by the vulnerability of the demented patient’ was the central experience of the nurses, having great impact on them professionally as well as personally. This feeling can be described (...) as encompassing the various stages of the care process: the nurses' initial meeting with the vulnerable patient; the intense decision‐making process, during which the nurses experienced several intense emotions influenced by supporting or hindering contextual factors; and the final coping process, a time when nurses came to terms with this challenging experience. From our examination of this care process, it is obvious that nurses' involvement in ANH decision‐making processes that concern patients with dementia is a difficult and ethically sensitive experience. On the one hand, the feeling of ‘being touched’ can imply strength, as it demonstrates that nurses are willing to provide good care. On the other hand, the feeling of ‘being touched’ can also imply weakness, as it makes nurses vulnerable to moral distress stemming from contextual influences. Therefore, nurses have to be supported as they carry out this ethically sensitive assignment. Practical implications are given. (shrink)

The purpose of this article is to clarify both the role of nurses in ethics meetings and the way in which ethics meetings can function as a catalyst for good nursing care. The thoughts presented are practice based; they arose from our practical experiences as nurses and ethicists with ethics meetings in health care organizations in Belgium. Our reflections are written from the perspective of the nurse in the field who is participating in (inter)professional ethical dialogue. First, the difficulties that (...) nurses experience while participating in ethics meetings are described. Then the possibilities for support of nurses in their ethical responsibility are explored. (shrink)

Intimacy and sexuality expressed by nursing home residents with dementia remains an ethically sensitive issue for care facilities, nursing staff and family members. Dealing with residents’ sexual longings and behaviour is extremely difficult, putting a burden on the caregivers as well as on the residents themselves and their relatives. The parties in question often do not know how to react when residents express themselves sexually. The overall aim of this article is to provide a number of clinical-ethical considerations addressing the (...) following question: ‘How can expressions of intimacy and sexuality by residents with dementia be dealt with in an ethically responsible way?’ The considerations formulated are based on two cornerstones: the current literature on older peoples’ experiences regarding intimacy and sexuality after the onset of dementia, and an anthropological-ethical framework addressing four fundamental pillars of human existence namely the decentred self, human embodiment, being-in-the-world and being-with-others. The resulting considerations are oriented toward the individual sphere, the partnership sphere, and the institutional sphere. The continuous interaction between these spheres leads to orientations that both empower the residents in question and respect the complex network of relationships that surrounds them. (shrink)

In this article, the place and the nature of an ethical dialogue that develops within Christian healthcare institutions in Flanders, Belgium is examined. More specifically, the question is asked how Christian healthcare institutions should position themselves ethically in a context of a pluralistic society. The profile developed by Caritas Catholica Flanders must take seriously not only the external pluralistic context of our society and the internal pluralistic worldviews by personnel/employees and patients, but also the inherent inspiration of a Christian healthcare (...) institution. This article concludes with ten general orientations that could shape the ethical dialogue from a Christian inspiration in a pluralistic context. (shrink)

Background: In the last two decades, nursing authors have published ethical analyses of palliative sedation—an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care. Research aim: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses’ moral identities are portrayed within this literature. Research design: We (...) reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher’s Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors’ portrayal of the nursing role. Findings: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses’ proximity to patients and families in end-of-life care. Discussion and conclusion: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples’ moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation. (shrink)

One of the common domains in health care in which the concept of vulnerability is used is end-of-life care, including euthanasia and assisted suicide (EAS). Since different uses and implications of the notion have been recognised in the literature on EAS, this paper aims to analyse them and reflect on who is the most vulnerable in the context of EAS. A prior exploratory review of the literature has served as a starting point for the discussion. We concluded that vulnerability is (...) a complex, multi-perspective and multi-layered concept, which implies the vulnerability of different stakeholders involved in EAS practices and vulnerability in different aspects of being human (i.e., physical, mental, moral, social and spiritual). A comprehensive understanding of the notion of vulnerability, which balances as well as complements the concept of autonomy, seems to be an indispensable element of the discourse on EAS. (shrink)

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

Contemporary bioethics pays considerable attention to the ethical aspects of dementia care. However, ethical issues of sexuality especially as experienced by institutionalized persons with dementia are often overlooked. The relevant existing ethics literature generally applies an implicit philosophical anthropology that favors the principle of respect for autonomy and the concomitant notion of informed consent. In this article we will illustrate how this way of handling the issue fails in its duty to people with dementia. Our thesis is that a more (...) inclusive philosophical anthropology is needed that also heeds the fate of this growing population. Drawing on the tradition of phenomenology, we will chalk out an anthropological framework that rests on four fundamental characteristics of human existence: the decentered self, human embodiment, being-in-the-world and being-with-others. Our aim in this article is thus to tentatively put forward a broader perspective for looking at aged sexuality in institutionalized people with dementia. Hopefully the developed framework will mark the beginning of a new and refreshed ethical reflection on the topic at hand. (shrink)

Background: Although nurses worldwide are confronted with euthanasia requests from patients, the views of palliative care nurses on their involvement in euthanasia remain unclear.Objectives: In depth exploration of the views of palliative care nurses on their involvement in the entire care process surrounding euthanasia.Design: A qualitative Grounded Theory strategy was used.Setting and participants: In anticipation of new Belgian legislation on euthanasia, we conducted semistructured interviews with 12 nurses working in a palliative care setting in the province of Vlaams-Brabant.Results: Palliative care (...) nurses believed unanimously that they have an important role in the process of caring for a patient who requests euthanasia, a role that is not limited to assisting the physician when he is administering life terminating drugs. Nurses’ involvement starts when the patient requests euthanasia and ends with supporting the patient’s relatives and healthcare colleagues after the potential life terminating act. Nurses stressed the importance of having an open mind and of using palliative techniques, also offering a contextual understanding of the patient’s request in the decision making process. Concerning the actual act of performing euthanasia, palliative care nurses saw their role primarily as assisting the patient, the patient’s family, and the physician by being present, even if they could not reconcile themselves with actually performing euthanasia.Conclusions: Based on their professional nursing expertise and unique relationship with the patient, nurses participating as full members of the interdisciplinary expert team are in a key position to provide valuable care to patients requesting euthanasia. (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)