This article discusses the relation between empirical and normative approaches in bioethics. The issue of dwarf tossing, while admittedly unusual, is chosen as a point of departure because it challenges the reader to look with fresh eyes upon several central bioethical themes, including human dignity, autonomy, and the protection of vulnerable people. After an overview of current approaches to the integration of empirical and normative ethics, we consider five ways that the empirical and normative can be brought together to speak (...) to the problem of dwarf tossing: prescriptive applied ethics, theoretical ethics, critical applied ethics, particularist ethics and integrated empirical ethics. We defend a position of critical applied ethics that allows for a two-way relation between empirical and normative theories. Against efforts fully to integrate the normative and the empirical into one synthesis, we propose that the two should stand in tension and relation to one another. The approach we endorse acknowledges that a social practice can and should be judged both by the gathering of empirical data and by normative ethics. Critical applied ethics uses a five stage process that includes: (a) determination of the problem, (b) description of the problem, (c) empirical study of effects and alternatives, (d) normative weighing and (e) evaluation of the effects of a decision. In each stage, we explore the perspective from both the empirical (sociological) and the normative ethical point of view. We conclude by applying our five-stage critical applied ethics to the example of dwarf tossing. (shrink)

The concept of dignity is notoriously vague. In this paper it is argued that the reason for this is that there are three versions of dignity that are often confused. First we will take a short look at the history of the concept of dignity in order to demonstrate how already from Roman Antiquity two versions of dignity can be distinguished. Subsequently, the third version will be introduced and it will be argued that although the three versions of dignity hang (...) together, they should also be clearly distinguished in order to avoid confusion. The reason for distinguishing the three versions is because all three of them are only partially effective. This will be demonstrated by taking the discussion about voluntary ‘dying with dignity’ as an example. Inspired by both Paul Ricoeur’s concept of ethics and the ethics of care a proposition will be done as to how the three versions of dignity may sustain each other and help achieve what neither one of the versions can do on its own. (shrink)

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

A closer look at the lived illness experiences of medical professionals themselves shows that shared decision making is in need of a logic of care. This paper underlines that medical decision making inevitably takes place in a messy and uncertain context in which sharing responsibilities may impose a considerable burden on patients. A better understanding of patients’ lived experiences enables healthcare professionals to attune to what individual patients deem important in their lives. This will contribute to making medical decisions in (...) a good and caring manner, taking into account the lived experience of being ill. (shrink)

Phenomenological healthcare research should include the lived experiences of a broad group of healthcare users. In this paper it is shown how shadowing can give a voice to people in vulnerable situations who are often excluded from interview studies. Shadowing is an observational method in which the researcher observes an individual during a relatively long time. Central aspects of the method are the focus on meaning expressed by the whole body, and an extended stay of the researcher in the phenomenal (...) event itself. Inherent in shadowing is a degree of ambivalence that both challenges the researcher and provides meaningful insights about the phenomenon. A case example of a phenomenological study on the experiences of elderly hospital patients is used to show what shadowing yields. (shrink)

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

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)

Background Family involvement in nursing homes is generally recognized as highly valuable for residents, staff and family members. However, family involvement continues to be challenging in practice. Aim To contribute to the dialogue about family involvement and develop strategies to improve family involvement in the nursing home. Methods This interpretative synthesis consists of a thematic analysis and care ethical interpretation of issues regarding family involvement from the perspective of families in nursing homes reported in literature. Findings This study reveals the (...) complexities of family involvement in the nursing home by drawing attention to the moral dimension of the issues experienced by families, as seen through the theoretical lens of Baier’s care ethical concept of trust as a theoretical lens. The synthesis of literature resulted in a thematic categorization of issues reported by families, namely, family–staff relationship, psychosocial factors and organizational circumstances. The care ethical interpretation of the synthesis of literature showed that the concept of trust resonates with all reported issues. Trust evolves over time. Early issues are mostly related to getting to know each other. Secondly, families want to experience that staff are competent and of good will. Difficult feelings families may have, such as guilt or loneliness, and dealing with the deterioration of the loved one puts families in a vulnerable position. This power imbalance between family and staff impedes a trusting relationship. Issues related to organizational circumstances, such as understaffing, also undermine families' trust in staff and the nursing home. Discussion and conclusion Baier’s theoretical concept of trust provides a deeper insight into the moral dimension of family involvement from the perspective of families in the nursing home. To improve family involvement in practice, we propose to aim future interventions at reinforcing trust in the relationship between family and staff as well as in the organizational context in which these care relationships occur. (shrink)

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the “ethic of autonomy” – (...) actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices. (shrink)

The ethics of hope has often been understood as a conflict between duties: do not lie versus do not destroy hope. However, such a way of framing the ethics of hope may easily place healthcare professionals at the side of realism and patients at the side of hope. That leaves unexamined relational dimensions of hope. The objective of this study was to describe a relational ethics of hope based on the perspectives of palliative care patients, their family members and their (...) healthcare professionals. A qualitative longitudinal method based on narrative theories was used. Semi-structured interviews on hope were conducted with twenty-nine palliative care patients, nineteen friends or family members, and fifty-two healthcare professionals, which were recorded and transcribed. Data on hope were thematically analyzed. The researchers wrote memos and did member checking with participants. When participants spoke about hope, they referred to power and empowerment, like the powerful bonding of hope between patients and physicians. They also associated hope with the loss of hope and suffering. Several participating healthcare professionals tried to balance both sides, which involved acknowledgment of hope and suffering. Hope and power were reflected in the ethical concept of empowerment, whereas suffering and the loss of hope were reflected in the ethical concept of compassion. Empowerment and compassion can be balanced in solicitude. In conclusion, a relational ethics of hope requires solicitude, in which healthcare professionals are able to weigh empowerment and compassion within particular relationships. (shrink)

Good nursing is more than exercising a specific set of skills. It involves the personal identity of the nurse. The aim of this article is to answer two questions: (1) what kind of person should the hospice nurse be? and (2) how should the hospice nurse engage in caring conversations? To answer these questions we analyse a nurse’s story that is intended to be a profile of an exemplary hospice nurse. This story was constructed from an analysis of five semistructured (...) interviews with hospice nurses, based on the ‘ethics of the caring conversation’, which is inspired by the ethical perspective of Paul Ricoeur. The research questions concentrate on the norms of respect, responsibility and reciprocity, which are integral parts of the ‘ethics of the caring conversation’. (shrink)

North Atlantic culture lacks a commonly shared view on dying well that helps the dying, their social environment and caregivers to determine their place and role, interpret death and deal with the process of ethical deliberation. What is lacking nowadays, however, has been part of Western culture in medieval times and was known as the ars moriendi (art of dying well) tradition. In this paper an updated version of this tradition is presented that meets the demands of present day secularized (...) and multiform society. Five themes are central to the new art of dying: autonomy and the self, pain control and medical intervention, attachment and relations, life balance and guilt, death and afterlife. The importance of retrieving the ancient ars moriendi outreaches the boundaries of palliative medicine, since it deals with issues that play a central role in every context of medical intervention and treatment. (shrink)

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a client council (...) in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also ‘the condition of equal voice’. (shrink)

This article discusses the relationship between personal and professional qualities in hospice nurses. We examine the notion of self-esteem in personal and professional identity. The focus is on two questions: (1) what is self-esteem, and how is it related to personal identity and its moral dimension? and (2) how do self-esteem and personal identity relate to the professional identity of nurses? We demonstrate it is important that the moral and personal goals in nurses' life coincide. If nurses' personal view of (...) the good life is compatible with their experiences and feelings as professionals, this improves their performance as nurses. We also discuss how good nursing depends on the responses that nurses receive from patients, colleagues and family; they make nurses feel valued as persons and enable them to see the value of the work they do. (shrink)

The actual rise of empirical contributions in bioethics questions – at a fundamental level – the place bioethics will reserve for empirical approaches in its field. This article aims to discuss the relationship between empirical research and normative evaluations and to apply this to the use of the concept of dignity in end-of-life research.It describes five possible ways in which empirical research can be related to normative ethics: prescriptive applied ethics, theorist ethics, critical applied ethics, particularist ethics and integrated empirical (...) ethics. In this article, we elaborate on the critical applied ethics perspective and present it as a five stage process comprising a) the determination of the problem, b) the description of the problem, c) the study of effects and alternatives, d) normative weighing and e) the evaluation of the effects of a decision. At each stage, we explore the perspective from both the empirical and the normative poles and apply it to the case of dignity in end-of-life decisions. (shrink)

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we (...) evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical–phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people. (shrink)

Patient participation in healthcare is highly promoted for democratic reasons. Older patients make up a large part of the hospital population but their voices are less easily heard by most patient participation instruments. The client council can be seen as an important medium to represent the interests of this increasing group of patients. Every Dutch healthcare institution is obliged to have a client council and its rights are legally established. This paper reports on a case study of a client council (...) in a hospital and shows how equality as the core democratic value manifests itself in practice and marginalizes the voices of older patients. Based on the work of Joan Tronto we show that sameness is the driving force behind the functioning of the client council which leads the council to operate as part of the hospital system. Consequently, important aspects of the hospital practice remain out of sight. To be of greater value for all patients we argue that successful patient participation requires not only equal opportunities but also ‘the condition of equal voice’. (shrink)

O cuidado espiritual é considerado um aspecto intrínseco às boas práticas de cuidados paliativos. Contudo, este é um desafio a profissionais de saúde. Há carência de propostas cientificamente embasadas e não religiosas para identificar e atender as necessidades existenciais/espirituais de pacientes e familiares. Este artigo tem como objetivo apresentar uma ferramenta de cuidado espiritual denominada Modelo Diamante ou _Ars Moriendi_, desenvolvida por um pesquisador holandês que a concebeu a partir de elementos extraídos de sua pesquisa empírica. O modelo é teoricamente (...) baseado em estruturas antropológicas não morais e não religiosas e está aberto a pessoas de uma variedade de origens culturais e religiosas. Tanto capelães quanto equipes multidisciplinares podem usar essa ferramenta hermenêutica. Ela ajuda a melhor compreender e atender as necessidades espirituais de pacientes e familiares nas dimensões que envolvem autonomia, sofrimento, relacionamentos, questões pendentes e esperança. A apresentação do Modelo Diamante ao público brasileiro também é um convite para testá-lo e avaliá-lo em estudos futuros que investiguem a espiritualidade em cuidados paliativos no Brasil. (shrink)

wn how the relationship with Aquinas' ('negative') theological analysis of 'life' as a name of God works out in qualifying his account of both human life on ...

This book collects a selection of the studies that were presented (Peeters 2001).

Hospitalization significantly impacts the lives of older people, both physically and psychosocially. There is lack of observation studies that may provide an embodied understanding of older patients’ experiences in its context. The aim of this single case study was to reach a deeper understanding of one older patient’s lived experiences of hospitalization. The study followed a phenomenological embodied enquiry design and the qualitative observation method of shadowing was used. In April 2011, one older patient was shadowed for 7 days, 5–7 (...) h per day. To facilitate understanding in the reader the experiences are first presented in a story and subsequently analyzed by means of the lifeworld framework. The findings show that hospitalization is experienced as ambiguous safety, disconnected time, the feeling of being partially involved, and the struggle to re-attune to the body. (shrink)

Based on our empirical research on global meaning in people with spinal cord injury and people with stroke, we formulated ‘inner posture’ as a concept in rehabilitation. Inner posture, as we concluded from our empirical data, refers to the way in which people bear what cannot be changed. It helps them to live with their injury. Considering that much has already been written about meaning from a variety of disciplines, the question arises whether the concept of inner posture adds something (...) new to the existing literature, or is just another name for a phenomenon that has already been described before in different terms. In this paper, we aim to investigate this and to clarify our conceptualization, by comparing the concept of inner posture with influential concepts in healthcare literature which seem to be more or less related. In the work of Puchalski regarding spirituality, Pargament regarding religion, Eliott regarding hope and Frankl regarding attitude, we found definitions and descriptions that seemed to come close to the phenomenon we refer to as inner posture. Because these concepts have various theoretical backgrounds, the comparison can help to better understand our concept of inner posture, through a process of dialogue between traditions, following Gadamer’s notion of dialogue as fusion of horizons of understanding. We conclude that inner posture differs from the other concepts in several ways. Some of these differences are more fundamental, other are partial. This suggests that we identified a new perspective on a phenomenon partially described earlier. The comparison also inspired us to slightly adjust our definition and to formulate new research questions. (shrink)

In North Atlantic culture dying is mostly seen as a personal event. The societal dimension of dying and the impact of the cultural horizon are often overlooked. In this contribution a revised version of a medieval Ars moriendi model is used as a lens to perceive the one-sidedness of North Atlantic culture.

The use of qualitative research in empirical bioethics is becoming increasingly popular, but its implementation comes with several challenges, such as difficulties in aligning moral epistemology and methods. In this paper, we describe some problems that empirical bioethics researchers may face; these problems are related to a tension between the different poles on the spectrum of scientific paradigms, namely a positivist and interpretive stance. We explore the ideas of narrative construction, ‘genres’ in medicine and dominant discourses in relation to empirical (...) research. We also reflect on the loss of depth and context that may occur with thematic or content analyses of interviews, and discuss the need for transparency about methodologies in empirical bioethics. Drawing on insights from narrative approaches in the social sciences and the clinical-educational discipline of Narrative Medicine, we further clarify these problems and suggest a narrative approach to qualitative interviewing in empirical bioethics that enables researchers to ‘listen (and read) in new ways’. We then show how this approach was applied in the first author’s research project about euthanasia decision-making. In addition, we stress the important ethical task of scrutinizing methodologies and meta-ethical standpoints, as they inevitably impact empirical outcomes and corresponding ethical judgments. Finally, we raise the question whether a ‘diagnostic’, rather than a ‘problem-solving’, mindset could and should be foregrounded in empirical ethics, albeit without losing a commitment to ethics’ normative task, and suggest further avenues for theorizing about listening and epistemic (in)justice in relation to empirical (bio)ethics. (shrink)