Definition of the problem Assistive technologies, including “smart” instruments and artificial intelligence (AI), are increasingly arriving in older adults’ living spaces. Various research has explored risks (“surveillance technology”) and potentials (“independent living”) to people’s self-determination from technology itself and from the increasing complexity of sociotechnical interactions. However, the point at which self-determination of the individual is overridden by external influences has not yet been sufficiently studied. This article aims to shed light on this point of transition and its implications. Arguments (...) The identification of this “tipping point” could contribute to analysis of familiar issues of conflict between the ethical principles of beneficence and respect for autonomy. When using technology in the living spaces of older adults, relationships, among other factors, may play a crucial role in older adult’s self-determination. We find the tipping point to occur subjectively and variably. To this end, the article combines theoretical ethical considerations with two examples from a qualitative study illustrating the perspective of older adults aged 65–85 years. Conclusion The study of the tipping point underscores the importance of perceiving an older person’s perspective. Particularly at the tipping point, this might be the only way to effectively identify whether the individual concerned perceives their self-determination as externally overridden. In conceptualizing the tipping point itself as well as its variability, we might create the basis for a normative call to shift the tipping point to promote self-determination and prevent overriding the will of older adults. We highlight individual, relational, and societal implications of our findings. (shrink)

Within bioethics, Kant’s conception of autonomy is often portrayed as excessively rationalistic, abstract, and individualistic, and, therefore, far removed from the reality of patients’ needs. Drawing on recent contributions in Kantian philosophy, we argue that specific features of Kantian autonomy remain relevant for medical ethics and for patient experience. We use contemporary end-of-life illness narratives—a resource that has not been analyzed with respect to autonomy—and show how they illustrate important Kantian themes, namely, the duty to know oneself, the interest in (...) elaborating universalizable principles, and the emphasis on ideals as points of orientation that guide behavior without ever being fully realized. As Kant does, the patient-authors discussed here perceive the end of life as a moment to reflect on the constitutive principles which have governed that life, thereby offering a privileged moment to pursue self-knowledge. We argue that bioethical conceptions of autonomy stand to gain if they revise their conception of Kantian moral philosophy as too formal, abstract, and detached from emotions and personal relationships to be helpfully applied. (shrink)

Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals. Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs’ perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs from (...) different positions and experience, including doctors and nurses in four different departments, were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient’s timing and sharing the patient’s wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs’ emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation. (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)

Bioethics has increasingly become a standard part of medical school education and the training of healthcare professionals more generally. This is a promising development, as it has the potential to help future practitioners become more attentive to moral concerns and, perhaps, better moral reasoners. At the same time, there is growing recognition within bioethics that nonideal theory can play an important role in formulating normative recommendations. In this chapter we discuss what this shift toward nonideal theory means for ethical curricula (...) within healthcare education. In particular, we contend that more attention to the particularities of historical and social context needs to be incorporated into bioethics training. To make this argument, we focus on two examples: teaching units on race and medicine and those that focus on stigma and coercion in mental health. For both, we show how a pedagogical approach in which educators focus on social injustice could influence how practitioners engage in ethics in the clinic. This chapter, then, demonstrates what a commitment to nonideal theory can mean practically when it comes to bioethics education. (shrink)

Jonathan Beever and Nicolae Morar’s article “The Porosity of Autonomy: Social and Biological Constitution of the Patient in Biomedicine” and its accompanying commentaries in the American Journal of Bioethics—though insightful, innovative, and provocative—overlook key interlocutors necessary for any discussion of whether the mid-twentieth-century biomedical principle of autonomy should be revised or revoked. The conversation sparked by “The Porosity of Autonomy” will remain both incomplete and politically untenable so long as there is no meaningful engagement with persons/communities who appeal to the (...) principle of patient autonomy in order to articulate and challenge the conditions of their oppression. (shrink)

In Moral Case Deliberation, healthcare professionals discuss ethically difficult patient situations in their daily practice. There is a lack of knowledge regarding the content of MCD and there is a need to shed light on this ethical reflection in the midst of clinical practice. Thus, the aim of the study was to describe the content of healthcare professionals’ moral reasoning during MCD. The design was qualitative and descriptive, and data consisted of 22 audio-recorded inter-professional MCDs, analysed with content analysis. The (...) moral reasoning centred on how to strike the balance between personal convictions about what constitutes good care, and the perceived dissonant care preferences held by the patient. The healthcare professionals deliberated about good care in relation to demands considered to be unrealistic, justifications for influencing the patient, the incapacitated patient’s nebulous interests, and coping with the conflict between using coercion to achieve good while protecting human dignity. Furthermore, as a basis for the reasoning, the healthcare professionals reflected on how to establish a responsible relationship with the vulnerable person. This comprised acknowledging the patient as a susceptible human being, protecting dignity and integrity, defining their own moral responsibility, and having patience to give the patient and family time to come to terms with illness and declining health. The profound struggle to respect the patient’s autonomy in clinical practice can be understood through the concept of relational autonomy, to try to secure both patients’ influence and at the same time take responsibility for their needs as vulnerable humans. (shrink)

Feminists have argued that oppressive socialization undermines the liberal model of autonomy. We contend that this argument can also be employed effectively as a challenge to the standard bioethical model of informed consent. We claim that the standard model is inadequate because it relies on presumptions of procedural autonomy and rational choice that overlook the problem of how agents are often socialized so that they adopt and internalize oppressive norms as part of their motivational structure. The argument that oppressive socialization (...) undermines liberalism’s view of autonomy is most relevant to what Beauchamp and Childress call the threshold elements of informed consent—competence and voluntariness. We show how these elements fail to account for morally relevant factors such as oppressive socialization. (shrink)

Concerns about exploitation pervade the literature on commercial cross-border reproductive care, particularly egg selling and surrogacy. But what constitutes exploitation, and what moral weight does it have? I consider the relationship between vulnerability, limited choice, consent, and mutually advantageous exploitation. To elucidate the difference between limited choice and consent, I draw on an account of relational autonomy. In the absence of a normative principle of fair distribution, it is unclear whether the providers of reproductive goods and services are treated fairly (...) in such contracts, and therefore whether they have been exploited. I finish with some pragmatic recommendations for minimizing risks and empowering egg sellers and surrogates. (shrink)

This article provides a critical assessment of some aspects of Ann Kerr and Tom Shakespeare's Genetic Politics: from eugenics to genome. In particular, I evaluate their claims: (a) that bioethics is too ‘top down’, involving normative prescriptions, whereas it should instead be ‘bottom up’ and grounded in social science; and (b) that contemporary bioethics has not dealt particularly well with people's moral concerns about eugenics. I conclude that several of Kerr and Shakespeare's criticisms are well-founded and serve as valuable reminders (...) to the bioethics community. These include the claims: that bioethics ought not to consist entirely of applying moral theory to cases; that bioethics must take account of relevant empirical evidence; and that bioethicists should be on the look out for those subtle social forces which can undermine the voluntariness of people's choices and consents. However, we should reject some of Kerr and Shakespeare's other criticisms and I conclude (amongst other things) that even ‘mainstream’ bioethics is better able to deal with difficult issues like eugenics than Kerr and Shakespeare suggest. (shrink)

In this article, we examine the emergence of a concept of medical feeding that emphasizes artificiality and medical technology. We discuss how this concept has been created in specific contrast to the daily provision of food and water; medical definitions retain clear disjunctures with cultural and religious beliefs surrounding food, gendered aspects of eating and feeding, and the everyday practices of social and family life in the United States. We begin with an examination of the historical processes involved in creating (...) artificial nutrition and hydration as a medical concept, including the evolution of terminology and practices in relation to technology advancement, legal cases, and public discourse. We.. (shrink)

Patientenverfügungen werden häufig als Ausdruck eines Bestrebens verstanden, ausschließlich selbst über die eigene Behandlung am Lebensende oder in anderen medizinisch kritischen Situationen entscheiden zu wollen. Kritische Stimmen wenden sich gegen eine Marginalisierung von Angehörigen oder ein verkürztes Verständnis von Autonomie, welches von der Relationalität als Grundgegebenheit menschlicher Existenz abstrahiert. Im vorliegenden Beitrag wird zunächst der rechtliche Rahmen beschrieben, der die Praxis bezüglich Patientenverfügungen und Stellvertretern in der Schweiz bestimmt. Zudem werden in der Schweiz verfügbare Patientenverfügungsformulare hinsichtlich der darin vorgesehenen Rolle (...) von Angehörigen bzw. nahe stehenden Personen analysiert. Abschließend soll gefragt werden, ob Patientenverfügungen, wie sie derzeit im Schweizer Kontext genutzt werden, wirklich als Instrumente rein individualistischer Selbstbestimmung verstanden werden können. (shrink)

Much discussion of decision-making processes in medicine has been patient-centred. It has been assumed that there is, most often, one patient. Less attention has been given to shared decision-making processes where two or more patients are involved. This article aims to contribute to this special area. What conditions need to be met if decision-making can be said to be shared? What is a shared decision-making process and what is a shared autonomous decision-making process? Why make the distinction? Examples are drawn (...) from the area of new reproductive medicine and clinical genetics. Possible gender-differences in shared decision-making are discussed. (shrink)

Free and informed choice is an oft-acknowledged ethical basis for living kidney donation, including parental living kidney donation. The extent to which choice is present in parental living kidney donation has, however, been questioned. Since parents can be expected to have strong emotional bonds to their children, it has been asked whether these bonds make parents unable to say no to this donation. This article combines a narrative analysis of parents’ stories of living kidney donation with a philosophical discussion of (...) conditions for parental decision-making. Previous research has shown that parents often conclude that it is “natural” to donate. Our study shows that this naturalness needs to be understood as part of a story where parental living kidney donation is regarded as natural and as a matter of non-choice. Our study also highlights the presence of a parenthood moral imperative of always putting one’s child’s needs before one’s own. On the basis of these results, we discuss conditions for decision-making in the context of parental LKD. We argue that the presence of a parenthood moral imperative can matter with regard to the decision-making process when parents consider whether to volunteer as living kidney donors, but that it need not hamper choice. We emphasise the need for exploring relational and situational factors in order to understand parental decision-making in the context of parental LKD. (shrink)

There is a gap in the clinical bioethics literature concerning the approach to assessment of medical decision-making capacity of adolescents or young adults who demonstrate diminished maturity due to longstanding reliance on caregiver support, despite having reached the age of majority. This paper attempts to address this question via the examination of a particular case involving assessment of the decision-making capacity of a young adult pregnant patient who also had a physically disabling neurological condition. Drawing on concepts from adolescent bioethics (...) and feminist critiques of bioethical theory, we argue that limited life experience, secondary to a disabling neurological condition, can result in a lack of adult-like capacity even in a patient who is legally an adult. In such cases, it may be that autonomy, to the extent that it is to be relevant and meaningful, must be viewed through a relational lens. Furthermore, clinicians may avoid unjustifiably paternalistic practices by working with the patient help her gain a better appreciation of the consequences of her decision, thereby calling forward her capacity rather than resorting to being directive in counseling. We conclude that lessons from this case can be used to approach ethically complex instances of medical decision-making in adult patients with normal cognition but diminished experiential maturity. (shrink)

Context: Despite much research on informed choice and the individuals’ autonomy in organised medical screening, little is known about the individuals’ decision-making process as expressed in their own words.Objectives: To explore the decision-making process among women invited to a mammography screening programme.Setting: Women living in the counties of Sør- and Nord-Trøndelag, Norway, invited to the first round of the Norwegian Breast Cancer Screening Program in 2003.Methods: Qualitative methods based on eight semistructured focus-group interviews with a total of 69 women aged (...) 50–69 years.Results: The decision to attend mammography screening was not based on the information in the invitation letter and leaflet provided by the NBCSP. They perceived the invitation letter with a prescheduled appointment as if a decision for mammography had already been made. This was experienced as an aid in overcoming the postponements that easily occur in daily lives. The invitation to mammography screening was embraced as an indication of a responsible welfare state, “like a mother taking care.”Conclusion: In a welfare state where governmental institutions are trusted, mass screening for disease is acknowledged by screening participants as a valued expression of paternalism. Trust, gratitude, and convenience were more important factors than information about benefits, harms, and risks when the women made their decisions to attend screening. These elements should be included in the ethical debates on informed choice in preventive medicine. (shrink)

This article provides a critical assessment of some aspects of Ann Kerr and Tom Shakespeare's Genetic Politics: from eugenics to genome. In particular, I evaluate their claims: (a) that bioethics is too ‘top down’, involving normative prescriptions, whereas it should instead be ‘bottom up’ and grounded in social science; and (b) that contemporary bioethics has not dealt particularly well with people's moral concerns about eugenics. I conclude that several of Kerr and Shakespeare's criticisms are well-founded and serve as valuable reminders (...) to the bioethics community. These include the claims: that bioethics ought not to consist entirely of applying moral theory to cases; that bioethics must take account of relevant empirical evidence; and that bioethicists should be on the look out for those subtle social forces which can undermine the voluntariness of people's choices and consents. However, we should reject some of Kerr and Shakespeare's other criticisms and I conclude (amongst other things) that even ‘mainstream’ bioethics is better able to deal with difficult issues like eugenics than Kerr and Shakespeare suggest. (shrink)

Relational autonomy theorists attempt to accommodate social embeddedness within a conception of autonomy. These attempts are conceptually messy, at best, and category errors, at worst. Rejecting the liberal conception of autonomy due to feminist concerns is more helpfully answered by the neorepublican notion of freedom as nondomination. The conception of freedom as nondomination captures the values that motivate the relational turn in moral and political theory and does so in a conceptually neater way than attempting to accommodate those concerns in (...) our accounts of autonomy. (shrink)

We argue that we have obligations to future people that are similar in kind to obligations we have to current people. Modifying Michael Bratman’s account, we argue that as planning agents we must plan for the future to act practically in the present. Because our autonomy and selfhood are relational by nature, those plans will involve building affiliative bonds and caring for others. We conclude by grounding responsibility to future others by the way we plan through our social institutions. Our (...) account fills out the story of responsibility to future generations by referring only to ourselves, our practical identities, and practical reason. (shrink)

In this chapter, I consider the idea that physician-assisted death might come into question in the cases of psychiatric patients who are incapable of making autonomous choices about ending their lives. I maintain that the main arguments for physician-assisted death found in recent medical ethical literature support physician-assisted death in some of those cases. After assessing several possible criticisms of what I have argued, I conclude that the idea that physicianassisted death can be acceptable in some cases of psychiatric patients (...) who lack autonomy ought to be taken into account in assessing the moral and legal acceptability of physician-assisted death. (shrink)

This paper seeks to respond to some of the recent criticisms directed toward bioethics by offering a contribution to a “critical bioethics”. Here this concept is principally defined in terms of the three features of interdisciplinarity, self-reflexivity and the avoidance of uncritical complicity. In a partial reclamation of the ideas of V.R. Potter, it is argued that a critical bioethics requires a meaningful challenge to culture/nature dualism, expressed in bioethics as the distinction between medical ethics and ecological ethics. Such a (...) contesting of the “bio” in bioethics arrests its ethical bracketing of environmental and animal ethics. Taken together, the triadic definition of a critical bioethics offered here provides a potential framework with which to fend off critiques of commercial capture or of being “too close to science” commonly directed toward bioethics. (shrink)

The COVID-19 pandemic has provoked new interest in the notion of vulnerability and in identifying alternative approaches for responding to vulnerable patients and populations during health emergencies. In this paper, I argue that the autonomy-based approach (the most dominant approach in bioethics) to responding to vulnerability during health emergencies is deficient because it focuses only on the interests, values, and decisions of the individual patient. It overly emphasizes respect for autonomy and not respect for the patient as it does not (...) consider the patient as a social and relational agent. Indeed, relational approaches to autonomy like the feminist and indigenous sub-Saharan African ethical approaches are promising alternatives. In this essay, I use the indigenous African relational approach to autonomy as an example of an alternative method which can be used to respond to vulnerability during a global health emergency like COVID-19. (shrink)

Primary health care is characterised by timely and appropriate health care access, delivered continuously over time to a specific population, providing a comprehensive service, with coordination of care for those that need it. Practitioners deal with a multiplicity of clinical issues within longitudinal relationships, embedded in the context of families and communities. We propose that these aspects of primary care have a bearing on how matters of decision making are considered and implemented. Further, the standard account of autonomous decision making (...) is not wholly adequate when applied to clinician–patient encounters in primary care. We add considerations of the impact of illness (however defined) and self-identity as also relevant to a more measured and full account. The context of primary care is quite different from that of secondary care. Although there are generalists who work in hospitals, we argue that this aspect and the other attributes of primary care generate special ethical considerations. One of these is how autonomy, or more fully, how respect for the principle of autonomy is considered and operationalised in community practice. In this study, we describe some theoretical aspects of autonomy and seek to apply, and challenge, these aspects in the context of clinical work in primary care. In doing so we will review the descriptors of primary care: why in essence it is different from other contexts of clinical work. (shrink)

Feminists have argued that oppressive socialization undermines the liberal model of autonomy. We contend that this argument can also be employed effectively as a challenge to the standard bioethical model of informed consent. We claim that the standard model is inadequate because it relies on presumptions of procedural autonomy and rational choice that overlook the problem of how agents are often socialized so that they adopt and internalize oppressive norms as part of their motivational structure. The argument that oppressive socialization (...) undermines liberalism’s view of autonomy is most relevant to what Beauchamp and Childress call the threshold elements of informed consent—competence and voluntariness. We show how these elements fail to account for morally relevant factors such as oppressive socialization. (shrink)

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

In this paper, I summarize the medical evidence regarding the auditory and non-auditory effects of noise and analyse the ethics of noise and personal autonomy in the social environment using a variety of case studies. Key to this discussion is the fact that, contrary to the traditional definition of noise, sound can be noise without being annoying, as the evidence shows that some sounds can harm without being perceived. Ultimately, I develop a theory of ‘noisy autonomy’ with which to guide (...) us in discussing the public health ethics of noise and other sounds. (shrink)

In this paper I use normative analysis to explore the curious and seemingly singular phenomenon whereby some dog owners deny the physical and moral facts about a situation where it is claimed their dog harmed or irritated others. I define these as epistemic and ethical denial, respectively, and offer a tentative exploration of their implications in terms of relational autonomy and responsible behaviour in public spaces.

Public health communications often attempt to persuade their audience to adopt a particular belief or pursue a particular course of action. To a large extent, the ethical defensibility of persuasion appears to be assumed by public health practitioners; however, a handful of academic treatments have called into question the ethical defensibility of persuasive risk- and health communication. In addition, the widespread use of persuasive tactics in public health communications warrants a close look at their ethical status, irrespective of previous critiques. (...) In this article, we review some ethical objections previously advanced against the use of persuasion in public health communications, and also consider some novel but potentially relevant objections. We conclude that persuasion is ethically problematic in some circumstances and attempt to clarify what these circumstances are. However, whereas persuasion may be ethically problematic in some circumstances, it need not be viewed as intrinsically problematic. (shrink)

The aim of this study was to explore the relational aspects of the consent process for HPV vaccination as experienced by school nurses, based on the assumption that individuals have interests related to persons close to them, which is not necessarily to be apprehended as a restriction of autonomy; rather as a voluntary and emotionally preferred involvement of their close ones. Thirty Swedish school nurses were interviewed in five focus groups, before the school based vaccination program had started in Sweden. (...) The empirical results were discussed in light of theories on relational autonomy. The school nurses were convinced that parental consent was needed for HPV vaccination of 11-year-old girls, but problems identified were the difficulty to judge when a young person is to be regarded as autonomous and what to do when children and parents do not agree on the decision. A solution suggested was that obtaining informed consent in school nursing is to be seen as a deliberative process, including the child, the parents and the nurse. The nurses described how they were willing strive for a dialogue with the parents and negotiate with them in the consent process. Seeing autonomy as relational might allow for a more dialogical approach towards how consent is obtained in school based vaccination programs. Through such an approach, conflicts of interests can be made visible and become possible to deal with in a negotiating dialogue. If the school nurses do not focus exclusively on accepting the individual parent’s choice, but strive to engage in a process of communication and deliberation, the autonomy of the child might increase and power inequalities might be reduced. (shrink)

A relational, feminist ethics of pregnancy sees the fetus as valuable both relationally and biologically, rather than minimized or ignored. Women are always at the center of ethical concern. To avoid gender-based discrimination, women’s bodily integrity, consent (to pregnancy), and physical “nestedness” (containment of the fetus within a person’s body) must be considered primary ethical concerns. This relational approach accounts for the significance of pregnancy and the grief of pregnancy loss while concurrently providing an ethical justification for abortion. This refined (...) framework has significant benefits because it can address a spectrum of ethical issues that arise around pregnancy. (shrink)

In interprofessional clinical teams, the patients have interpersonal relationships with several practitioners. The aim of this study was to explore patients’ and practitioners’ perceptions of how such relationships may contribute to promote the whole team’s respect for the patient’s autonomy, as interpersonal patient–provider relationships may contribute to enhance patient autonomy. Sixteen qualitative in-depth interviews were conducted with 12 informants, including patients, nurses, physiotherapists, and physicians from three rehabilitation teams. Data were analysed according to Grounded Theory procedures. The informants discussed interpersonal (...) relationships as an integral and significant part of the team work. The practitioners tried to adjust their professional approach to the patients’ genuine opinions and let patients decide the teams’ goals. Close relationships with patients could be important to accomplish this, particularly described by nurses and physiotherapists, who could facilitate the communication with the rest of the team. (shrink)

This article is an expansion of comments I was honored to present at a celebration of the life and work of Anne Donchin at the June 2016 meeting of the International Network on Feminist Approaches to Bioethics in Edinburgh. It is obviously far from comprehensive, but I hope it gives readers a glimpse of an Anne of whose depths many of us were not fully aware. One of the most difficult parts of talking about someone who has died is highlighting (...) the positive without overdoing it to the extent that their friends and loved ones find themselves rolling their mental eyes a bit, since most of us—no matter how wonderful—are a little less than perfect. But my problem here is that the more I have found out... (shrink)

BackgroundIn cancer care, do not resuscitate orders are common in the terminal phase of the illness, which implies that the responsible physician in advance decides that in case of a cardiac arrest neither basic nor advanced Coronary Pulmonary Rescue should be performed. Swedish regulations prescribe that DNR decisions should be made by the responsible physician, preferably in co-operation with members of the team. If possible, the patient should consent, and significant others should be informed of the decision. Previous studies have (...) shown that physicians and nurses can experience ethical dilemmas in relation to DNR decisions, but knowledge about what ethical reasoning they perform is lacking. Therefore, the aim was to describe and explore what ethical reasoning physicians and nurses apply in relation to DNR-decisions in oncology and hematology care.MethodsA qualitative, descriptive and explorative design was used, based on 287 free-text comments in a study-specific questionnaire, answered by 216 physicians and nurses working in 16 oncology and hematology wards in Sweden. Comments were given by 89 participants.ResultsThe participants applied a situation-based ethical reasoning in relation to DNR-decisions. The reasons given for this were both deontological and utilitarian in kind. Also, expressions of care ethics were found in the material. Universal rules or guidelines were seen as problematic. Concerning the importance of the subject, nurses to a higher extent underlined the importance of discussing DNR-situations, while physicians described DNR-decisions as over-investigated and not such a big issue in their daily work.ConclusionThe study revealed that DNR-decisions in oncology and hematology care gave rise to ethical considerations. Important ethical values described by the participants were to avoid doing harm and to secure a peaceful and “natural” death with dignity for their dying patients. A preference for the expression “allow for natural death” instead of the traditional term “do not resuscitate” was found in the material. (shrink)

Genetic information affects patients’ families differently than other types of medical information. Family members might have a compelling interest in patients’ genetic information, but who counts as family? In this article, I assess current definitions of family and propose a pluralistic account of family, which comprises definitions of family based on biomedical, legal, and functional aspects. Respectful of various forms of family, a pluralistic account includes those with interests in genetic information. Finally, I apply it in the hypothetical case of (...) a sperm donor with a hereditary condition. (shrink)

Background: Obtaining patients’ informed consent is an ethical and legal obligation in healthcare practice. Whilst the law provides prescriptive rules and guidelines, ethical theories of autonomy provide moral foundations. Models of practice of consent, have been developed in the bioethical literature to assist in understanding and integrating the ethical theory of autonomy and legal obligations into the clinical process of obtaining a patient’s informed consent to treatment.Aims: To review four models of consent and analyse the way each model incorporates the (...) ethical meaning of autonomy and how, as a consequence, they might change the actual communicative process of obtaining informed consent within clinical contexts.Methods: An iceberg framework of consent is used to conceptualise how ethical theories of autonomy are positioned and underpin the above surface, and visible clinical communication, including associated legal guidelines and ethical rules. Each model of consent is critically reviewed from the perspective of how it might shape the process of informed consent.Results and discussion: All four models would alter the process of obtaining consent. Two models provide structure and guidelines for the content and timing of obtaining patients’ consent. The two other models rely on an attitudinal shift in clinicians. They provide ideas for consent by focusing on underlying values, attitudes and meaning associated with the ethical meaning of autonomy.Conclusions: The paper concludes that models of practice that explicitly incorporate the underlying ethical meaning of autonomy as their basis, provide less prescriptive, but more theoretically rich guidance for healthcare communicative practices. (shrink)

Mainstream breast cancer social movements such as that of Susan G. Komen have called on all women to race or fight for the cure for breast cancer. They suggest that the fight can be won by buying and wearing pink ribbons, taking part in races and walks, donating money, and participating in research. For some patients with breast cancer, research participation may involve non-diagnostic tumor biopsies. While this clinical research is performed in the hope of gaining new knowledge through the (...) removal and study of breast cancer tissue, these procedures have been heavily criticized because they offer little potential benefit to the patient providing the tissue (Helft and Daugherty 2006; Kimmelman et al. 2012;... (shrink)

Background Preconception Expanded Carrier Screening is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive (...) autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals. Main text Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions A notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship. (shrink)

The aim of this article is to investigate the concept of care in contemporary medical practice and medical ethics. Although care has been hailed throughout the centuries as a crucial ideal in medical practice and as an honourable virtue to be observed in codes of medical ethics, I argue that contemporary medicine and medical ethics suffer from the lack of a theoretically sustainable concept of care and then discuss possible reasons that may help to explain this absence. I draw on (...) the empirical studies of Carol Gilligan on care and connectedness as ontologically situated realities in human life. Based on a philosophical elaboration of her findings on the ethics of care emphasizing relationality, I try to show how the notion of ‘relational ontology’ originating from this stream of thought may be of help in developing a medical ethics that acknowledges care as a perspective to be observed in all interactions between physicians and patients. (shrink)

ABSTRACT A brief discussion of how relational autonomy, phenomenological theories of embodiment and narrative approaches to clinical ethics can open up the space for more subtle feminist ethical reflection about genetic termination.

The dilemma of whether to allow relatives to see or even touch their loved one while she undergoes cardiopulmonary resuscitation has been discussed for roughly four decades. However, Family Presence During Adult Resuscitation is still not widely implemented. In this paper, I espouse relational autonomy to make a case for a clinical approach of family-centered care and FPDR. In recent years, family-centered care has gained increasing support. I argue that relational autonomy provides a conceptual framework for both FCC and FPDR. (...) In turn, FCC provides a plausible clinical approach to justify FPDR, while the empirical evidence that supports FPDR provides a useful example to justify FCC. (shrink)

The clinical relationship has been underexplored in dementia care. This is in part due to the way that the clinical relationship has been articulated and understood in bioethics. Robert Veatch’s social contract model is representative of a standard view of the clinical relationship in bioethics. But dementia presents formidable challenges to the standard clinical relationship, including ambiguity about when the clinical relationship begins, how it weathers changes in narrative identity of patients with dementia, and how the intimate involvement of family (...) fits alongside a paradigmatically dyadic relationship. Drawing on work in recent feminist theory, a critique is offered of the standard clinical relationship in bioethics as underwritten by an individualistic conception of autonomy. An alternative view of the clinical relationship in dementia, one that embraces a relational account of autonomy, is put forward. (shrink)

Agency is talked about by many as something that people living with dementia lose, once they've lost much else—autonomy, identity, and privacy, among other things. While the language of loss may capture some of what transpires in dementia, it can obscure how people living with dementia and their loved ones share agency through sharing capacities for memory, language, and decision‐making. We suggest that one consequence of adopting a framework of loss is that it makes the default response to changes in (...) agency the substitution of a family member's agency for the purported lost agency of someone living with dementia. We argue for an alternative framework in which sharing agency is recognized as a central feature of living with dementia. Building on the work of relational theorists, we argue for the value of thinking about agency in dementia as fundamentally shared, and explore potential implications for treatment, caregiver support, and building dementia‐friendly environments. (shrink)

Recent work calls for excluding clinical ethics consultants’ religious ethical commitments from formulating recommendations about particular cases and communicating those recommendations. I demonstrate that three arguments that call for excluding religious ethical commitments from this work logically imply that consultants may not use their secular ethical commitments in their work. The call to sever clinical ethics consultation from the ethical commitments of clinical ethics consultants has implications for the scope of work consultants may do and for the competencies required for (...) such work. (shrink)

An understanding of autonomy has important significance in North American health care. Although a respect for autonomy is necessary to protect the self-determination and agency of birthing women in hospital settings, I suggest that enactments of autonomy that are independent of relationships offer only an incomplete interpretation of such a vital concept. In this article I explore an understanding of autonomy situated within the context of a relational birthing narrative. In so doing, autonomy becomes conceptualized as contextual and concrete, giving (...) rise to an embodied view of the birthing woman. (shrink)

COVID-19 has turned many ethical principles and presuppositions upside down. More precisely, the principle of respect for autonomy has been shown to be ill suited to face the ethical challenges posed by the current health crisis. Individual wishes and choices have been subordinated to public interests. Patients have received trial therapies under extraordinary procedures of informed consent. The principle of respect for autonomy, at least in its mainstream interpretation, has been particularly questioned during this pandemic. Further reflection on the nature (...) and value of autonomy is urgently needed. Relational autonomy has been proposed as an alternative account of autonomy that can more adequately respond to contemporary ethical issues in general and to a pandemic such as the one we are currently facing in particular. As relational autonomy is an emerging notion in current bioethics, it requires further consideration and development to be properly operationalized. This paper aims to show how six different philosophical branches––namely, philosophy of nature, philosophical anthropology, existential phenomenology, discourse ethics, hermeneutics, and cultural anthropology––have incorporated the category of relation throughout the twentieth century. We first delve into primary philosophical sources and then apply their insights to the specific field of medical ethics. Learning from the historical developments of other philosophical fields may provide illumination that will enable bioethics to experience a successful “relational turn”, which has been partially initiated in contemporary bioethics but not yet achieved. (shrink)