This paper aims to critique the phenomenon of advanced patient autonomy and choice in healthcare within the specific context of self-testing devices. A growing number of self-testing medical devices are currently available for home use. The premise underpinning many of these devices is that they assist individuals to be more autonomous in the assessment and management of their health. Increased patient autonomy is assumed to be a good thing. We take issue with this assumption and argue that self-testing provides a (...) specific example how increased patient autonomy and choice within healthcare might not best serve the patient population. We propose that current interpretations of autonomy in healthcare are based on negative accounts of liberty to the detriment of a more relational understanding. We also propose that Kantian philosophy is often applied to the healthcare arena in an inappropriate manner. We draw on the philosophical literature and examples from the self-testing process to support these claims. We conclude by offering an alternative account of autonomy based on the interrelated concepts of relationality, care and responsibility. (shrink)

In spite of the growing interest in nursing ethics, few studies have focused on ethical dilemmas experienced by nurses working with clinical studies as ‘research nurses’. The aim of the present study was to describe and explore ethical dilemmas that Swedish research nurses experience in their day-to-day work. In a qualitative study a purposeful sample of six research nurses from five wards of differing disciplines in four Swedish hospitals was interviewed. The analysis displayed several examples of ethical dilemmas, primarily tensions (...) between the nurses’ obligations to the study and to the patients involved. A guiding moral principle for the nurses was patient-centeredness, where the interest of research must not override the interest of the patient. In situations where tensions between research and patient interests occurred, and doctors and nurses disagreed upon the judgement, the nurses sometimes chose to follow the doctors’ advice, and thus acted against their own moral judgment. Such situations seemed to create feelings of moral distress among the nurses. They described their profession as being ‘invisible’ and as lacking opportunities for ethical competence building. The conclusion is that research nurses frequently experience severe and difficult ethical dilemmas in their daily work. They need to be acknowledged as a particular profession in the health care organisation and encouraged to develop their specific ethical competence. (shrink)

In this paper I introduce a theoretical framework on care developed by the Norwegian nurse and philosopher Kari Martinsen, and I argue that this approach has relevance not only within nursing, but also within clinical medicine. I try to substantiate this claim by analysing some of the key concepts in this approach, and I illustrate the potential clinical relevance of this approach by applying it in relation to two care scenarios. Finally, I discuss some of the concerns that have been (...) raised in relation to the aim of highlighting care in medicine. (shrink)

This paper analyses the question what other healthcare professions should learn from nursing ethics, e.g. what should medical ethics learn from nursing ethics. I first analyse and reject all strong versions of the claim that nursing ethics is unique, because nursing is a unique practice. I then move to the question of whether the link between nursing ethics and nursing theory can be a model for other areas of healthcare ethics. I provide an analysis of the possibility of creating a (...) theory of medicine and find that there cannot be a theory of medicine, and I argue briefly that this finding is also applicable to nursing. If there cannot be a theory of nursing, this entails that nursing ethics cannot be justifiably based on such a theory. In the final section, I then analyse the success of nursing ethics in resisting certain of the vices of Anglo‐American analytic ethics, in particular the reductionism and individualism that characterizes much of healthcare ethics. I conclude that other healthcare ethics could usefully learn from this aspect of nursing ethics. (shrink)

This paper makes the case for a pluralist, contextualist view of nursing ethics. In defending this view, I briefly outline two current perspectives of nursing ethics – the Traditional View and the Theory View. I argue that the Traditional View, which casts nursing ethics as a subcategory of healthcare ethics, is problematic because it (1) fails to sufficiently acknowledge the unique nature of nursing practice; and (2) applies standard ethical frameworks such as principlism to moral problems which tend to alienate (...) or undermine nursing ethical concerns. Alternatively, the Theory View, which aims to build an independent and comprehensive theory of nursing ethics, is also found wanting because it (1) fails to sufficiently acknowledge the heterogeneous nature of nursing practices; (2) overemphasizes the differences and undervalues the similarities between nurses and other health professionals; and (3) assumes that one ethical framework can be meaningfully applied across diverse moral problems and contexts.My alternative, is to argue that nursing ethics inquiry should take a pluralist and critical stance towards available ethical frameworks and the negotiation of the ethical realm. On this view, the search for moral consensus or a unique ethical framework for nursing is replaced by the task of working strategically with multiple frameworks in order to expand the moral agency of nurses and empower them to positively engage with moral uncertainty as an inevitable feature of living a moral life. I conclude by indicating some of the implications that this has for the teaching of nursing ethics. (shrink)

Objectives: The aim of this paper is to examine the way in which nurses manage patients who refuse nursing care procedures.Design: This paper reports on a qualitative study which was undertaken to explore the way in which nurses obtain consent prior to nursing care procedures. Focus groups were carried out to obtain background data concerning how consent is obtained. Critical incidents were collected through in depth interviews as a means of focusing on specific incidents in clinical practice.Setting: Two teaching hospitals (...) in England.Participants: Purposive sample of qualified nurses.Results: When a patient refuses nursing care, nurses respond by giving information until the patient finally accedes to the procedure. Nurses will go to great lengths to achieve patients’ agreement to the procedure, but the extent to which the agreement remains voluntary cannot be ascertained by the data collected in this study. If the patient does not eventually agree to a procedure, there is evidence that nurses will administer the care in the absence of consent.Conclusions: Nurses are concerned to obtain the patient’s consent prior to the administration of nursing care but if this cannot be achieved do not regard obtaining consent as an absolute requirement. Consent is preferred, but not considered essential. Nurses have some understanding of the principles of informed consent but do not apply them to everyday clinical nursing practice. (shrink)

This paper situates the moral domain of practice within the context of a particular description of nursing practice – one that sees human interaction at the heart of that practice. Such a description fits not only with professional rhetoric but also with literature from patients and recent empirical work exploring the nature of nursing practice.Martha Levine in her 1977 description of ethics, within the context of nursing practice, indicated that what was important from an ethical perspective was how we interact (...) with each other, with patients and colleagues, on a daily basis. What enables such interaction to display moral sensitivity, insight into patient need, and a focus on the good for the patient? Of relevance when answering this question is the empirical evidence indicating that professional socialization, as a nurse or a doctor, may dull the individual’s moral sense. If this is the case, cognizance needs to be taken of such evidence when identifying theoretical approaches from mainstream ethics that may provide insight and value for nurse education. It is suggested that such insight and value can be gained from a consideration of the work of Aristotle, Murdoch, and Vetlesen. (shrink)

From the perspectives of both an espoused core underlying value of nursing, and of public policy, the patient's voice should be central to our understanding of patient/client need, appropriate care and intervention. However, accessing and hearing the patient's voice is fraught with difficulty. Edwards reminds us that our raison d’être as nurses is human vulnerability; a vulnerability sometimes brought into sharp focus because of illness or disease. However, when people are at their most vulnerable, they are often least able to (...) identify, or indeed to express, their need – beyond the completely obvious. This paper provides a short descriptive record of one patient's experience of nursing care. This description is placed within the context of moral arguments about the nature of nursing and the impact this may have on decision‐making regarding the appropriate distribution of nursing time. One of our most acute deficits in knowledge, regarding nursing in the UK and Ireland, is a lack of knowledge of the day‐to‐day activities judgements, decisions and interventions of staff nurses at the sharp edge of patient care delivery. We also have little understanding of how, or indeed whether, staff nurses identify or articulate these activities, judgements, decisions and interventions as having a moral dimension that is rooted in respect for the needs and perceptions of the individual patient. Recent empirical work suggests that a substantial proportion of nursing time is spent in prioritizing and delegating care. We have little idea of the impact of prioritization and delegation on the quality of patient care, as perceived by the recipients of that care, our patients. It is urgent that these deficits in our knowledge and understanding are addressed. This is the case both from the perspective of providing high standards of patient care and from the point of view of linking perceptions of the moral dimension of nursing practice, organizational structure, manpower planning, nursing decisions and interventions, to patient outcomes. (shrink)

This qualitative cross-sectional survey, undertaken in the antenatal booking clinics of a hospital in central London, explores pregnant women’s responses to routine HIV testing, examines their reasons for declining or accepting the test, and assesses how far their responses fulfil standard criteria for informed consent. Of the 32 women interviewed, only 10 participants were prepared for HIV testing at their booking interview. None of the women viewed themselves as being particularly at risk for HIV infection. The minority of the participants (...) who declined testing differed from those who accepted, by interpreting test acceptance as risky behaviour, privileging the negative outcomes of HIV positivity and expressing an inability to cope with these, should they occur. Troublingly, only a minority of women had a broad understanding of the rationale for the test, and none fulfilled the standard criteria for informed consent. This study suggests that, although routine screening combined with professional recommendation may be successful in increasing uptake, this may be at the cost of eroding informed consent. Protecting third parties from a preventable disease may outweigh the moral duty of respecting autonomy, enshrined in Western bioethical tradition. Nevertheless, such a policy should be made transparent, debated in the public domain and negotiated with women seeking antenatal care. (shrink)

This paper introduces the controversy surrounding active voluntary euthanasia and describes the legal position on euthanasia and assisted suicide in the UK. Findings from studies of the nurses' attitudes to euthanasia from the national and international literature are reviewed. There are acknowledged difficulties in carrying out research into attitudes to euthanasia and hence the review of findings from the published studies is followed by a methodological review. This methodological review examines the research design and data collection methods used in the (...) published studies, problems with understanding definitions of euthanasia and the measurement of attitudes. The paper concludes with a discussion of how research in this area may influence nursing practice. (shrink)

This paper explores the dominant rational approach to informed consent and challenges the appropriateness of this approach to ethical decision‐making with people with dementia. In dementia care a dominant assumption exists that people are not autonomous because of their inability to make decisions and exercise freedom of choice. The rational understanding of autonomy being the capacity to exercise freedom of choice means that health and social care professionals feel justified in making decisions on behalf of the person with dementia. If (...) a person cannot consent to an intervention then a proxy is used to make the decision. This paper argues that such an approach reinforces the mind‐body dualism that dominates health and social care discourse. Whilst acknowledging the place of proxy decision‐making, it is argued that there is a need to hear the voice of the person with dementia that goes beyond rational understandings of what is heard and that does not reinforce separation of the mind and body. An understanding of the person through their ‘narrative identity’ is proposed and illustrated through a case example. Drawing on the philosophy of Ricoeur it is argued that an individual's narrative identity can be developed and used to underpin informed consent decisions. Using a case example it is argued that paying attention to an individual's narrative identity provides a way of respecting the autonomy of the individual with dementia in a way that is consistent with their overall life plan. (shrink)

This paper argues that the professional situation of junior doctors is unique in ethically important ways and thus that ethics work focusing on junior doctors specifically is necessary. Unlike the medical student or the more senior doctor, the doctor in his or her early postgraduate years is simultaneously a responsible health professional, a subjugate learner and a human resource. These multiple roles generate the set of ethical issues faced by junior doctors, a set that has some overlaps with that faced (...) by medical students and with that faced by more experienced doctors but is far from completely continuous with either. Further, the multiple roles that junior doctors play affect their options for negotiating the ethical challenges that they face. Their position determines not only the content of the set of ethical issues that they encounter, but also the kinds of actions they can take in the face of these challenges. Thus considering junior doctors only in combination with medical students or more senior doctors fails on two fronts. Firstly, only a very incomplete set of the ethical issues faced by junior doctors will be addressed, and, secondly, the constraints associated with the specific professional situation of junior doctors will not be adequately considered, limiting the practical applicability for these agents of any such analyses. (shrink)

Bioethics case reports generally treat aspects of moral fathomability, characterised and addressed in different ways. This paper reads the case as a textual model of scenarios and draws attention to its structure, narrative shape, linguistic register, and the effects of tone and temporality on reader expectation and responsiveness. Such textual elements of case composition reflect authorial purpose and influence the interpretation, including moral and ethical interpretation, of bioethics cases.

This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vigour contributed to the clinician's judgements about life expectancy and the continuation or termination of medical treatment. In this paper we will discuss the normative importance of vitality as a diagnostic cue and will argue that vitality, as a sign (...) perceived by doctors and nurses, has moral significance and represents a legitimate contribution to clinical decision-making in difficult cases where the child's life is at stake. We will argue that these clinical intuitions can be justified on a moral basis but only with certain qualifications that accounts for a certain objectivity and intersubjective reliability in the therapeutic judgements. (shrink)

Background The convergence of neuroscience, genomics, and data science holds promise to unveil the neurobiology of psychosis and to produce new ways of preventing, diagnosing, and treating psychotic illness. Yet, moral challenges arise in neurobiological research and in the clinical translation of research findings. This article investigates the views of relevant actors in mental health on the moral challenges of accessing neurobiological information in the context of psychosis. Methods Semi-structured individual interviews with two groups: researchers employed in the National Health (...) Service (NHS) or a university in England (n = 14), and mental health professionals employed in NHS mental health services (n = 14). This article compares results in the two groups (total n = 28). Results This article presents findings around three conceptual areas: (1) research ethics as mostly unproblematic, (2) psychosis, neurobiological information, and mental health care, and (3) identity, relationships, and the future. These areas are drawn from the themes and topics that emerged in the interviews across the two groups of participants. Researchers and health professionals provided similar accounts of the moral challenges of accessing—which includes acquisition, communication, and use of—neurobiological information in the context of psychosis. Acquiring neurobiological information was perceived as mostly unproblematic, provided ethical safeguards are put in place. Conversely, participants argued that substantive moral challenges arise from how neurobiological information is delivered—that is, communicated and used—in research and in clinical care. Neurobiological information was seen as a powerful tool in the process through which individuals define their identity and establish personal and clinical goals. The pervasiveness of this narrative tool may influence researchers and health professionals’ perception of ethical principles and moral obligations. Conclusions This study suggests that the moral challenges that arise from accessing neurobiological information in the context of psychosis go beyond traditional research and clinical ethics concerns. Reflecting on how accessing neurobiological information can influence individual self-narratives will be vital to ensure the ethical translation of neuroscience and genomics into mental health. Trial registration The study did not involve a health care intervention on human participants. It was retrospectively registered on 11 July 2018, registration number: researchregistry4255. (shrink)

The empirical turn in bioethics has been widely discussed by philosophical medical ethicists and social scientists. The focus of this discussion has been almost exclusively on methodological issues in research, on the admissibility of empirical evidence in rational argument, and on the possible superiority of empirical methods for permitting democratic lay involvement in decision-making. In this paper I consider how the collection of qualitative and quantitative social research evidence plays its part in the construction of social order, and how this (...) creates certain paradoxes for the normative ideal of a public bioethics. The analysis in this paper is based on Foucauldian ideas, and on recent work in the history of the human sciences. The paper closes with some open questions for theoretical work in the sociology and philosophy of bioethics. (shrink)

While certain substantial moral dilemmas in health care have been given much attention, like abortion, euthanasia or gene testing, doctors rarely reflect on the moral implications of their daily clinical work. Yet, with its aim to help patients and relieve suffering, medicine is replete with moral decisions. In this qualitative study we analyse how doctors handle the moral aspects of everyday clinical practice. About one hundred consultations were observed, and interviews conducted with fifteen clinical doctors from different practices. It turned (...) out that the doctors’ approach to clinical cases followed a rather strict pattern across specialities, which implied transforming patients’ diverse concerns into specific medical questions through a process of ‘essentialising’: Doctors broke the patient’s story down, concretised the patient’s complaints and categorised the symptoms into a medical sense. Patients’ existential meanings were removed, and the focus placed on the patients’ functioning. By essentialising, doctors were able to handle a complex and ambiguous reality, and establish a medically relevant problem. However, the process involved a moral as well as a practical simplification. Overlooking existential meanings and focusing on purely functional aspects of patients was an integral part of clinical practice and not an individual flaw. The study thus questions the value of addressing doctors’ conscious moral evaluations. Yet doctors should be aware that their daily clinical work systematically emphasises beneficence at the expense of others—that might be more important to the patient. (shrink)