Legal age limits in accessing donor information: experiences of donor-conceived people, parents, sperm donors and counsellors.

RESEARCH QUESTION: What are the lived experiences of donor-conceived people, parents, sperm donors and counsellors related to legal age limits on accessing donor information in the Netherlands? DESIGN: A phenomenological study was carried out that included 20 donor-conceived individuals, 15 parents, 6 sperm donors and 5 counsellors. Data were collected through online qualitative in-depth interviews and focus groups. The data were analysed using Dahlberg's Reflective Lifeworld Approach. RESULTS: The results show how: (i) age limits create challenges related to dependency, autonomy and loyalty to parents; (ii) donor information can be important for identity development, which looks different at different ages; (iii) inaccessible information can lead to unfair loss and may be perceived as negative; (iv) relational stability provides a good foundation for dealing with the (in)accessibility of donor information; (v) procedural barriers and age limits increase the inaccessibility of donor information; and (vi) comprehensive counselling is desired for donor-conceived individuals, parents and donors. CONCLUSIONS: This study shows that legal age limits on accessing donor information can lead to several negative consequences. The age limits focus on one individual, which is not appropriate for questions about ancestry that always pertain to a relational network. Counselling should be tailored to the child's needs, and the child's family should be involved. Furthermore, the donor should receive independent counselling.

Response: arguments to abolish the legal age limits of access to information about the gamete donor by donor offspring.

The Journal of Medical Ethics previously published on the debate in the UK and the Netherlands concerning the legal age limits imposed on donor-conceived people for access to information about the identity of gamete and embryo donors. In that publication, three arguments were foregrounded against lowering these age limits as a general rule for all donor-conceived people. In this contribution, we engage with these arguments and argue why we think they are insufficient to maintain the age limits. In contrast, we argue for a more suited, contextual and relational ethical framework based on care ethics, which emphasises relational autonomy and its dynamic, contextual development. This framework, we argue, provides a comprehensive approach for the analysis we made of the question of age limits and was applied in research performed in the Netherlands, commissioned by the Dutch Minister of Health. The framework enabled us to weigh the multidisciplinary-legal, psychological, phenomenological and ethical-findings of our research.

Engaging otherness: care ethics radical perspectives on empathy.

Throughout the years, care ethicists have raised concerns that prevalent definitions of empathy fail to adequately address the problem of otherness. They have proposed alternative conceptualizations of empathy that aim to acknowledge individual differences, help to extend care beyond one's inner circle, and develop a critical awareness of biases and prejudices. We explore three such alternatives: Noddings' concept of engrossment, Meyers' account of broad empathy, and Baart's concept of perspective-shifting. Based on these accounts, we explain that care ethics promotes a conceptualization of empathy that is radical in its commitment to engage otherness and that is characterized by being: (1) receptive and open, (2) broad and deep in scope, (3) relational and interactive, (4) mature and multifaceted, (5) critical and reflective, (6) disruptive and transformative. This type of empathy is both demanding and rewarding, as it may inspire health professionals to rethink empathy, its challenges, and its contribution to good care and as it may enrich empathy education and professional empathy practices in health care.

Reimagining relationality for reproductive care: Understanding obstetric violence as "separation".

Nursing Ethics has published several pleas for care ethics and/or relationality as the most promising ethical foundation for midwifery philosophy and practice. In this article, we stand by these calls, contributing to them with the identification of the structural form of violence that a care ethical relational approach to reproductive care is up against: that of "maternal separation". Confronted with reproductive and obstetric violence globally, we show that a hegemonic racialized, instrumentalized, and individualized conception of pregnancy is responsible for a severance of relationalities that are essential to safe reproductive care: (1) the relation between the person and their child or reproductive capabilities; and (2) the relation between the pregnant person and their community of care. We pinpoint a separation of the maternal relation in at least two discursive domains, namely, the juridical-political and the ethical-existential. Consequently, we plea for a radical re-imagination of maternal relationality, envisioning what care ethical midwifery, including abortion care, could be.

Towards a relational conceptualization of empathy.

Empathy is a fundamental concept in health care and nursing. In academic literature, it has been primarily defined as a personal ability, act or experience. The relational dimensions of empathy have received far less attention. In our view, individualistic conceptualizations are restricted and do not adequately reflect the practice of empathy in daily care. We argue that a relational conceptualization of empathy contributes to a more realistic, nuanced and deeper understanding of the functions and limitations of empathy in professional care practices. In this article, we explore the relational aspects of empathy, drawing on sources that offer a relational approach, such as the field of care ethics, the phenomenology of Edith Stein and qualitative research into interpersonal and interactive empathy. We analyse the relational aspects of three prevalent components of empathy definitions: the underlying ability or act (i.e. the cognitive, affective and perception abilities that enable empathy); the resulting experience (i.e. empathic understanding and affective responsivity) and the expression of this experience (i.e. empathic expression). Ultimately, we propose four inter-related understandings of empathy: (a) A co-creative practice based on the abilities and activities of both the empathizer and the empathee; (b) A fundamentally other-oriented experience; (c) A dynamic, interactive process in which empathizer and empathee influence each other's experiences; (d) A quality of relationships.

A spoonful of care ethics: The challenges of enriching medical education.

BACKGROUND: Nursing Ethics has featured several discussions on what good care comprises and how to achieve good care practices. We should "nurse" ethics by continuously reflecting on the way we "do" ethics, which is what care ethicists have been doing over the past few decades and continue to do so. Ethics is not limited to nursing but extends to all caring professions. In 2011, Elin Martinsen argued in this journal that care should be included as a core concept in medical ethical terminology because of "the harm to which patients may be exposed owing to a lack of care in the clinical encounter," specifically between doctors and patients. However, Martinsen leaves the didactical challenges arising from such a venture open for further enquiry. OBJECTIVES: In this article, we explore the challenges arising from implementing care-ethical insights into medical education. RESEARCH DESIGN: Medical education in the Netherlands is investigated through a "care-ethical lens". This means exploring the possibility of enriching medical education with care-ethical insights, while at the same time discovering possible challenges emerging from such an undertaking. PARTICIPANTS AND RESEARCH CONTEXT: This paper has been written from the academic context of a master in care ethics and policy. ETHICAL CONSIDERATIONS: We have tried to be fair and respectful to the authors discussed and take a neutral stance towards the findings portrayed. FINDINGS: Several challenges are identified, which we narrow down to two types: didactical and non-didactical. DISCUSSION AND CONCLUSION: In order to overcome these challenges, we must not underestimate the possible resistance to a paradigm shift. Our efforts should mainly target the learning that takes place in the clinical phases of medical training and should be accompanied by the creation of awareness in healthcare practice.

Beyond demarcation: Care ethics as an interdisciplinary field of inquiry.

BACKGROUND:: For many years the body of literature known as 'care ethics' or 'ethics of care' has been discussed as regards its status and nature. There is much confusion and little structured discussion. The paper of Klaver et al. (2014) was written as a discussion article to which we respond. OBJECTIVES:: We aim to contribute to the ongoing discussion about the status and nature of care ethics. RESEARCH DESIGN:: Responding to 'Demarcation of the ethics of care as a discipline' by Klaver et al. (2014) and 'Three versions of an ethics of care' by Edwards (2009), we identified shared concerns and formulated criticisms of both texts in order to develop an alternative view. PARTICIPANTS AND RESEARCH CONTEXT:: This paper has been written from the academic context of a master in care ethics an policy. ETHICAL CONSIDERATIONS:: We have tried to be fair and respectful to the authors discussed. FINDINGS:: Both Klaver et al. (2014) and Edwards (2009) raise important concerns about the question if care ethics can be considered an academic discipline, and to what extend it can be seen as a moral theory. Despite shared concerns, their arguments fail to convince us in all respects. DISCUSSION AND CONCLUSION:: We propose to conceive care ethics as an interdisciplinary field of inquiry, incorporating a dialectical relation between empirical research and theoretical reflection. Departing from the notion of caring as a practice of contributing to a life-sustaining web, we argue that care ethics can only profit from a loosely organized academic profile that allows for flexibility and critical attitude that brings us close to the good emerging in specific practices. This asks for ways of searching for a common focus and interest that is inherently democratic and dialogical and thus beyond demarcation.

Care ethics: An ethics of empathy?

BACKGROUND: Empathy is a contested concept in the field of care ethics. According to its proponents, empathy is a unique way to connect with others, to understand what is at stake for them, and to help guide moral deliberation. According to its critics, empathy is biased, inaccurate or a form of projection that does not truly grasp and respect the otherness of the other, and that may be distorted by prejudices. OBJECTIVES: We aim to contribute to a better understanding of the significance of empathy in care ethics by reviewing both the functions and limitations of empathy in this field. RESEARCH DESIGN: Drawing on literature from care ethics and closely related fields, we identify the relevant functions and limitations of empathy from the relational, epistemic, normative, and political perspectives. These perspectives are drawn from four main characteristics of care ethics, which serve as a concise framework for understanding the significance of empathy. PARTICIPANTS AND RESEARCH CONTEXT: This article is written as part of an empirical and theoretical research project that aims to better understand the functions and limitations of empathy in care practices, from the perspective of care ethics. ETHICAL CONSIDERATIONS: We try to do justice to both the appraisal and critique of empathy in the care ethics literature. FINDINGS: Our findings stress that the relationship between care ethics and empathy is complicated and rife with opposing views. Therefore, we conclude that care ethics is not an ethics of empathy. DISCUSSION AND CONCLUSION: Based on our findings, we formulate pathways that may guide the further analysis of empathy in care practices and care ethics.

Me? The invisible call of responsibility and its promise for care ethics: a phenomenological view.

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

How shared is shared decision-making? A care-ethical view on the role of partner and family.

The aim of shared decision-making (SDM) is to provide information to patients in order to enable them to decide autonomously and freely about treatment together with the doctor, without interference, force or coercion by others. Relatives may be considered as hindering or impeding a patient's own decision. Qualitative-empirical research into lived experience of SDM of patients with cancer, however, problematises the patient's autonomy when facing terminal illness and the need to make decisions regarding treatment. Confronted with this difficulty, this contribution tries to think through patients' dependency of others, and make their autonomy more relational, drawing on care-ethical critics of a one-sided view of autonomy and on Ricoeur's view of the fundamentally intersubjective, relational self. We aim to conceptualise relatives not as a third party next to the doctor and the patient, but as co-constituents of the patient's identity and as such present in the decision-making process from the outset. What is more, partners and the family may be of inestimable help in retrieving the patient's identity in line with the past, present and possible future.

Against dichotomies: On mature care and self-sacrifice in care ethics.

INTRODUCTION: In previous issues of this journal, Carol Gilligan's original concept of mature care has been conceptualized by several (especially Norwegian) contributors. This has resulted in a dichotomous view of self and other, and of self-care and altruism, in which any form of self-sacrifice is rejected. Although this interpretation of Gilligan seems to be quite persistent in care-ethical theory, it does not seem to do justice to either Gilligan's original work or the tensions experienced in contemporary nursing practice. DISCUSSION: A close reading of Gilligan's concept of mature care leads to a view that differs radically from any dichotomy of self-care and altruism. Instead of a dichotomous view, a dialectical view on self and other is proposed that builds upon connectedness and might support a care-ethical view of nursing that is more consistent with Gilligan's own critical insights such as relationality and a practice-based ethics. A concrete case taken from nursing practice shows the interconnectedness of professional and personal responsibility. This underpins a multilayered, complex view of self-realization that encompasses sacrifices as well. CONCLUSION: When mature care is characterized as a practice of a multilayered connectedness, caregivers can be acknowledged for their relational identity and nursing practices can be recognized as multilayered and interconnected. This view is better able to capture the tensions that are related to today's nursing as a practice, which inevitably includes sacrifices of self. In conclusion, a further discussion on normative conceptualizations of care is proposed that starts with a non-normative scrutiny of caring practices.

The sensible health care professional: a care ethical perspective on the role of caregivers in emotionally turbulent practices.

This article discusses the challenging context that health care professionals are confronted with, and the impact of this context on their emotional experiences. Care ethics considers emotions as a valuable source of knowledge for good care. Thinking with care ethical theory and looking through a care ethical lens at a practical case example, the authors discern reflective questions that (1) shed light on a care ethical approach toward the role of emotions in care practices, and (2) may be used by practitioners and facilitators for care ethical reflection on similar cases, in the particular and concrete context where issues around emotional experiences arise. The authors emphasize the importance of allowing emotions to exist, to acknowledge them and to not repress them, so that they can serve as a vehicle for ethical behavior in care practices. They stress the difference between acknowledging emotions and expressing them limitlessly. Formational practices and transformational research practices are being proposed to create moral space in care institutions and to support health care professionals to approach the emotionally turbulent practices they encounter in a way that contributes to good care for all those involved.

Ricoeur and the ethics of care.

This introduction to the special issue on 'Ricoeur and the ethics of care' is not a standard editorial. It provides not only an explanation of the central questions and a first impression of the articles, but also a critical discussion of them by an expert in the field of care ethics, Joan Tronto. After explaining the reasons to bring Ricoeur into dialogue with the ethics of care (I), and analyzing how the four articles of this special issue shape this dialogue (II), the authors give the floor to Tronto (III). She focuses on the central issue at stake: what may be the value of a more abstract, conceptual approach for the ethics of care as a radically practice-oriented way of thinking? She argues that the four contributions too easily frame this value in terms of Ricoeur's relational anthropology. Instead she points out that if the ethics of care is a kind of practice, it makes sense to think of such practices as necessarily building upon one another, expanding constantly the context and relationships upon which practices are built. In the final section (IV) the authors respond to Tronto's framing of 'practices all the way up' by arguing that this approach need not be at odds with one inspired by Ricoeur's conceptual thinking. Rather the two can be seen as different movements-upwards and downwards-that both contribute constructively to the shaping of the important intermediary zone between the practices and the abstract ideals.

Decision-making in case of an unintended pregnancy: an overview of what is known about this complex process.

Introduction: Unintended pregnancies are a worldwide health issue, faced each year by one in 16 people, and experienced in various ways. In this study we focus on unintended pregnancies that are, at some point, experienced as unwanted because they present the pregnant person with a decision to continue or terminate the pregnancy. The aim of this study is to learn more about the decision-making process, as there is a lack of insights into how people with an unintended pregnancy reach a decision. This is caused by 1) assumptions of rationality in reproductive autonomy and decision-making, 2) the focus on pregnancy outcomes, e.g. decision-certainty and reasons and, 3) the focus on abortion in existing research, excluding 40% of people with an unintended pregnancy who continue the pregnancy. Method: We conducted a narrative literature review to examine what is known about the decision-making process and aim to provide a deeper understanding of how persons with unintended pregnancy come to a decision.Results: Our analysis demonstrates that the decision-making process regarding unintended pregnancy consists of navigating entangled layers, rather than weighing separable elements or factors. The layers that are navigated are both internal and external to the person, in which a 'sense of knowing' is essential in the decision-making process. Conclusion: The layers involved and complexity of the decision-making regarding unintended pregnancy show that a rational decision-making frame is inadequate and a more holistic frame is needed to capture this dynamic and personal experience.

Shroud waving self-determination: A qualitative analysis of the moral and epistemic dimensions of obstetric violence in the Netherlands.

Obstetric violence is an urgent global problem. Recently, several studies have appeared on obstetric violence in the Netherlands, indicating that it is a more widespread phenomenon in Dutch maternity care than commonly thought. At the same time, there has been very little public outrage over these studies. The objective of this qualitative research is to gain insight into the working and normalization of obstetric violence by focusing on the moral and epistemic injustices that both facilitate obstetric violence and make it look acceptable. Following the study design of Responsive Evaluation, interviews, homogenous, and heterogenous focus groups were done in three phases, with thirty-one participants, consisting of ten mothers, eleven midwives, five doulas and five midwives in training. All participants were already critically engaged with the topic, which was a selection criterion to be able to bring the existing depth of knowledge on this topic of people in the field to the fore. Data was analyzed through Thematic Analysis. We elaborate on two groups of results. First, we discuss the forms of obstetric violence most commonly mentioned by the participants, which were vaginal examinations, episiotomies, and pelvic floor support. Second, we demonstrate two major themes that concern practices related to moral and epistemic injustice: 1) 'Playing the dead baby card', with the sub-themes 'shroud waving', 'hidden agenda', and 'normalizing obstetric violence'; and 2) 'Troubling consent', with sub-themes 'not being asked for consent', 'saying "yes"', 'saying "no"', and 'giving up resistance'. While epistemic injustice has been analyzed in relation to obstetric violence, moral injustice has not yet been conceptualized as a fundamental part of both the practice and the justification of obstetric violence. This research hence contributes not only to the better understanding of obstetric violence in the Netherlands, but also to a further theorization of this specific form of gender-based violence.

"Genuine and fundamentally human": a qualitative study into Dutch humanist chaplains' conceptualizations of empathy.

Empathy has been highlighted as a key concept in chaplaincy care, but its meaning has hardly been explored in depth within this field. This study aims to help develop stronger conceptual clarity by investigating humanist chaplains' conceptualizations of empathy. Data were collected through semi-structured interviews with twenty humanist chaplains working in health care, military, and prisons. A qualitative design was employed to clarify which components and features constitute empathy in humanist chaplaincy care. Empathy emerges as a multidimensional concept that is "fundamentally human." Chaplains distinguish between true and pseudo empathy based on different features including authenticity and concern. This article provides a conceptual model that combines the different components and features of empathy in humanist chaplaincy care and the relationship between them in light of empathy's humanizing quality. It may be used for educational purposes and could function as a conceptual framework for future research efforts.

Living in an 'ordinary' neighborhood? A care-ethical exploration of the experiences of young adults with mild intellectual disabilities.

Care ethics considers the moral good as arising within practices and in people's experiences in these practices. This contribution applies a care-ethical approach to inquire into the effects of a major change in the social domain policy in The Netherlands. The new policy is based upon the expectation that young adults with Mild Intellectual Disabilities (MID) become 'active citizens, participating in their neighborhood', with the support of care organizations and local municipalities. Accordingly, care responsibilities were transferred to the local level (municipalities). On this level, however, basic insights were lacking concerning the needs and wishes of the young adults with Mild Intellectual Disabilities, and concerning the possibilities for local collaboration. Research was performed by taking Joan Tronto's definition of care as a starting point and applying a method adequate to capture young adults' experiences in one municipality. We conclude that this neighborhood is not an environment wherein they can participate. Points of interestThis article offers new insight into the effects of a major change in long-term care policy in the Netherlands that emphasizes participation.Care ethics focusses on practices, in which more than two people are involved, that help meet needs of care (or fail in this respect).The article presents an inquiry into the experiences and needs of six participants living in a Dutch facility where youths and young adults with Mild Intellectual Disability are supported to participate in society, as expressed by themselves in photos and interviews and as observed through the method of shadowing.The results of this inquiry are three aerial photos that show how the participants live in supporting networks with gaps, underscoring their experiences of being displaced and feeling unacknowledged in the vicinity of their home.Different organizations directed at care for young adults with Mild Intellectual Disability can learn from the care needs that result from this way of organizing care.

The Undercommons of Childbirth and Their Abolitionist Ethic of Care. A Study into Obstetric Violence Among Mothers, Midwives (in Training), and Doulas.

Engaging in dialogue with critical mothers, midwives, midwives in training, and doulas in the Netherlands, this study furthers the theoretical understanding of both obstetric violence and the activist resistance against it. Obstetric violence is understood as part of a process of relational separation, leaving the pregnant person isolated. The activist resistance against it is consequently theorized as the abolitionist building of an alternative "otherworld" of radical relational care. The themes established are: (1) "institutionalized separation" with the subtheme's "expropriation," "carcerality," and "obstetric violence;" and (2) "undercommoning childbirth" with subthemes "fugitive planning," "anarchic relationality," and "obstetric abolition."

"We Need to Talk About Empathy": Dutch Humanist Chaplains' Perspectives on Empathy's Functions, Downsides, and Limitations in Chaplaincy Care.

This paper investigates the functions, downsides, and limitations of empathy in chaplaincy care. Data were collected from 20 humanist chaplains working in health care, prison, and military settings using semi-structured interviews. According to the participants, empathy is at the heart of their profession but has disadvantages as well. The analysis yields seven major functions of empathy with corresponding downsides and limitations: (1) to connect, (2) to understand, (3) to guide, (4) to acknowledge, (5) to motivate, (6) to inspire, and (7) to humanize. We argue for a need to "talk about empathy" since despite its importance and challenges, there is little professional and academic discussion about empathy in chaplaincy care. We hope that the findings of this study can function as starting points for the discussion and thus contribute to the ongoing professionalization of chaplaincy care. To that end, we propose three topics for further reflection and conversation.