Akabayashi and Slingsby's (2006) article reminds us that the North American emphasis on individualistic autonomy is not universal. As the authors explain, personal identity in Japan is not construc...

Ethics exists among beings that can relate to one another and who can create change in one another. Although this may appear as a simple truism, the implications of relation and change in bioethics are manifold. For instance, one can relate not only to others, but also can enter into self-relation by relating to oneself. Self-relation problematizes autonomy insofar as one does not have immediate access to all of oneself and so therefore also does not immediately fully determine oneself in (...) the way that an uncomplicated understanding of autonomy might imply. This article proceeds as a preliminary exposition of the concepts of relation and change as they apply to bioethics, particularly as they inform autonomy, action theory, and the porous subject. (shrink)

Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature-minor doctrine, an uncommon legal exception to the rule of parental decision-making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of ways. However, recently there has been a trend (...) to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision-making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision-making capacity with decision-making authority. (shrink)

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that (...) patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk. (shrink)

Within this thesis, I argue for an interpretive approach to bioethics in pediatric intensive care. I begin by outlining the dominant bioethical doctrine that defines standards for ethical care in critically ill children. I critique this doctrine as legalistic and acultural. Drawing largely on the ideas of Charles Taylor, I call for a reconception of bioethics and propose an interpretive framework that is centred on culture and context. Finally, I illustrate this interpretive approach through a comparative study of two cases (...) in pediatric intensive care: the narratives of Marc and Larry. (shrink)

BackgroundThe purpose of this study is to make a philosophical argument against the phenomenological critique of standardization in clinical ethics. We used the context of clinical ethics in Saudi Arabia to demonstrate the importance of credentialing clinical ethicists.MethodsPhilosophical methods of argumentation and conceptual analysis were used.ResultsWe found the phenomenological critique of standardization to be flawed because it relies on a series of false dichotomies.ConclusionsWe concluded that the phenomenological framing of the credentialing debate relies upon two extreme views to be navigated (...) between, not chosen among, in the credentialing of clinical ethicists. (shrink)

John Bayley’s Elegy for Iris, his memoir about living with Iris Murdoch after the onset of dementia, unsettles models of mind and agency that ignore human relationship, dependency, and the vulnerabilities of the cared for and the carer. Experiencing Iris as ambiguously absent and present while he attentively cares for her, Bayley frames his memoir as an elegy, a reflection on love and loss that conventionally represents two subjects—the author and the one he lost. Bayley’s acts of care and his (...) stories about his wife, both as she was and as she has become, sustain her moral worth as a person. Writing as an elegist, a survivor entitled to be heard, Bayley moves his experience of caring and loss from personal to social realms, from speaker to listener, opening ethical space for consolation and for social responsibility for the vulnerable. (shrink)

The right to refuse treatment is generally accepted in the legal and bioethics discourses; however, the use of advance directives remains contentious. Some jurisdictions have introduced statutory frameworks to govern the creation and implementation of advance directives, underpinned primarily by the recognition of respect for personal autonomy. Although there are no legislation and judicial decisions on advance decision-making in Malaysia, the considered view is that healthcare practitioners perceived its utility in managing patient care. This paper examines the potential and challenges (...) of applying a statutory framework in Malaysia, drawing from relevant regulatory examples. It argues for greater public awareness within the healthcare discourse and knowledge dissemination regarding the availability, usage and clinical guidance on advance decision-making. The main conclusion drawn from this exploratory analysis is that further understanding of and education about advance decision-making within the population and healthcare practitioners should precede the implementation of a statutory regime in Malaysia. (shrink)

In this article, I will explore the ethical concerns arising out of the use of preimplantation tissue typing to create saviour siblings. There are two main ethical concerns about the welfare of the child to be born as a result of PTT. The first is whether the child to be born is treated as a commodity, as simply a means to save the life of his or her sibling. The second is whether the child to be born will be harmed (...) as a result of PTT, either physically, psychologically or socially. These two ethical concerns reflect an individualistic approach to the welfare of the child, whose interests are treated as largely separate to the interests of other family members. I will argue that the welfare of the child born as a result of PTT should be conceived more broadly to include not only the child’s individual interests, but also the collective interests the child shares with his or her family. I base this broader conception of welfare on the notion of human flourishing, which recognises that the welfare of a child is inextricably connected to the welfare of the intimate collective that is his or her family. The collective interests of intimate family members are particularly relevant in the context of PTT, as the members are engaged in a shared journey to save the life of an ill child. (shrink)

The term “exceptionalism” was introduced into health care in 1991 when Bayer described “HIV exceptionalism” as the policy of treating the human immunodeficiency virus different from other infectious diseases, particularly other sexually transmitted diseases. It was reflected in the following practices: pre- and post-HIV test counseling, the development of specific separate consent forms for HIV testing, and stringent requirements for confidentiality of HIV test results. The justification for these practices was the belief that testing was essential for prevention and that (...) patients might not seek HIV testing if confidentiality were not guaranteed. Confidentiality was believed to be particularly important given the degree of discrimination and stigmatization associated with the illness. Anonymous testing was a further step in ensuring strict confidentiality, even though such a practice prevented public officials from contacting partners and others who were at risk. (shrink)

There is a growing movement to increase access to palliative care by declaring it a human right. Calls for such a right—in the form of articles in the healthcare literature and pleas to the United Nations and World Health Organization—rarely define crucial concepts involved in such a declaration, in particular ‘palliative care’ and ‘human right’. This paper explores how such concepts might be more fully developed, the difficulties in using a human rights approach to promote palliative care, and the relevance (...) of such an enterprise to public health ethics. (shrink)

Although autonomy is clearly still the paradigm in bioethics, there is increasing concern over its value and feasibility. In agreeing with those concerns, I argue that autonomy is not just a status, but a skill, one that must be developed and maintained. I also argue that nearly all healthcare interactions do anything but promote such decisional skills, since they rely upon assent, rather than upon genuinely autonomous consent. Thus, throughout most of their medical lives, patients are socialised to be heteronomous, (...) rather than autonomous. Yet, at the worst possible time – critical care decision-making – when life and death consequences are attached to the choices, the paradigm shifts and real consent is sought, even demanded, thereby making an often traumatic situation even harder.I go on, though, to also reject paternalistic models of beneficence as an alternative. Rather, I conclude that the problem is so fundamental in healthcare that a genuine solution would require a radical restructuring. I recommend steps that can be taken in the interim to improve the situation and to move toward such a restructuring. (shrink)

This article examines Re Imogen (No 6) (2020) 61 Fam LR 344, a decision of the Family Court of Australia, which held that an application to the Family Court is mandatory if a parent or a medical practitioner of a child or adolescent diagnosed with gender dysphoria disputes the diagnosis, the capacity to consent, or the proposed treatment. First, we explain the regulatory framework for the medical treatment of gender dysphoria in children and adolescents, including the development of the welfare (...) jurisdiction under Section 67ZC of the Family Law Act 1975 (Cth). We then provide an overview of the Re Imogen decision, and discuss the balancing exercise involved in determining a child’s best interests in the medical treatment context. We challenge the Family Court’s conclusion that, in relation to a dispute about diagnosis or treatment, a finding that the child or adolescent is Gillick competent to consent to treatment is not determinative, and the Family Court must determine the dispute. We argue that this conclusion represents an unjustified incursion into the right of Gillick competent transgender children and adolescents to make decisions about their own bodies and identities, and that the protective role of parents and the Family Court cannot justify interfering with their bodily autonomy in this context. Finally, we propose an alternative regulatory framework that removes the Family Court from the medical treatment process for gender dysphoria in circumstances of dispute between a parent and their Gillick competent child. (shrink)

Although Chinese law imposes informed consent for medical treatments, the Chinese understanding of this requirement is very different from the European one, mostly due to the influence of Confucianism. Chinese doctors and relatives are primarily interested in protecting the patient, even from the truth; thus, patients are commonly uninformed of their medical conditions, often at the family’s request. The family plays an important role in health care decisions, even substituting their decisions for the patient’s. Accordingly, instead of personal informed consent, (...) what actually exists is ‘family informed consent’. From a Western perspective, these features of Chinese law and Chinese culture might seem strange, contradicting our understanding of doctor-patient relationship and even the very essence of self-determination and fundamental rights. However, we cannot forget the huge influence of cultural factors in these domains, and that ‘Western’ informed consent is grounded on the individualistic nature of Western culture. This article will underline the differences between the Western and the Chinese perspectives, clarifying how each of them must be understood in its own cultural environment. But, while still respecting Chinese particularities, this paper advocates that China adopt patient individual informed consent because this is the only solution compatible with human dignity and human rights. (shrink)

To address certain seemingly irresolvable conflicts between patients and clinicians regarding treatment plans that are rooted in patients' religious or spiritual beliefs, Kuczewski (2007), in a ref...

This article examines the role of context in the development and deployment of standards of medical decision-making. First, it demonstrates that bioethics, and our dominant standards of medical decision-making, developed out of a specific historical and philosophical environment that prioritized technology over the person, standardization over particularity, individuality over relationship and rationality over other forms of knowing. These forces de-contextualize the patient and encourage decision-making that conforms to the unnatural and contrived environment of the hospital. The article then explores several (...) important differences between the home health care and acute care settings. Finally, it argues that the personalized, embedded, relational and idiosyncratic nature of the home is actually a much more accurate reflection of the context in which real people make real decisions. Thus, we should work to “re-contextualize” patients, in order that they might be better equipped to make decisions that harmonize with their real lives. (shrink)

It has become common in medical ethics to discuss difficult cases in terms of the principles of respect for autonomy, beneficence, nonmaleficence, and justice. These moral concepts or principles serve as maxims that are suggestive of appropriate clinical behavior. Because this language evolved primarily in the acute care setting, I consider whether it is in need of supplementation in order to be useful in the long-term care setting. Through analysis of two typical cases involving residents of long-term care facilities, I (...) argue for the additional principles of candor and responsibility for narrative integrity. (shrink)

This paper will present and discuss our conclusions about the ethics of living donation for liver transplant (LDLT) after 8 year of collaboration between our clinical ethics consultation service and liver transplant teams, in the course of which we met with all donor-candidates. We will focus on the results of a follow-up study that was conducted in order to evaluate the long-term consequences for potential donors and to interview them on the ethical aspects of the screening process. This study was (...) conducted from April 2007 to November 2009 and consisted of interviews with donor-candidates, regardless of whether they underwent harvest surgery, at least 1 year after the recipient’s transplant. We explored their views about their own and the recipients’ physical and psychological condition, changes in family and career dynamics, their experience as potential or real donors, and their views about LDLT process in general. Results shed new light on the ethical grounds of LDLT and allow us to envisage new ways of improving the ethical soundness of current procedures and practices. In particular, we argue that the purpose of an ethics committee should be to provide follow-up support for the donors rather than merely to check the freedom of donors’ consent. We also suggest that the recipient’s consent deserves more attention than it currently receives. (shrink)

The goal of this article is to augment the ethical discussion among nurses with the findings from empirical research on autonomy of older adults with type 2 diabetes mellitus. There are many factors influencing autonomy. These include: health conditions, treatment, knowledge, experience and skills, personal approach as well as familial patterns, type of relationship, life history and social context. Fifteen older adults with type 2 diabetes mellitus were interviewed in a nurse-led diabetes clinic. These participants perceive three processes which support (...) autonomy in responsive relationships: preserving patterns of concern and interaction, nurturing collaborative responsibilities and being closely engaged in trustful and helpful family relations. People with diabetes realize autonomy in various responsive relationships in their unique life context. Next, we performed a literature review of care ethics and caring in nursing with regard to relational autonomy. We classified the literature in five strands of care: attitude-oriented, dialogue-oriented, activity-oriented, relationship-oriented and life-oriented. According to our respondents, autonomy in responsive relationships is fostered when patient, nurses, professionals of the health team and family members carry out care activities supported by a relational attitude of care. They can best realize autonomy in relationships with others when several essential aspects of care and caring are present in their lives. Therefore, we advocate a comprehensive approach to care and caring. (shrink)

We examined differences in the knowledge and beliefs that exist among nurse researchers in the USA (n = 119) regarding informed consent and the use of data from patients’ medical records. Using a mail survey, two domains of ethical knowledge and beliefs were assessed: the legal right to privacy and the moral right to privacy. More than half of the participants were very confident in their knowledge of institutional review board procedures, research ethics, informed consent, the legal right to privacy, (...) and the moral right to privacy. In contrast, most rated themselves as uncertain about US federal research regulations and there was wide variation in knowledge about current federal guidelines. Those who were more confident in their knowledge of or had more practical experience with research ethics, were no more likely to answer correctly a question about current federal guidelines regulating the use of patient data from medical records than those who reported less confidence or experience. (shrink)

Spirituality or religion often presents as a foreign element to the clinical environment, and its language and reasoning can be a source of conflict there. As a result, the use of spirituality or religion by patients and families seems to be a solicitation that is destined to be unanswered and seems to open a distance between those who speak this language and those who do not. I argue that there are two promising approaches for engaging such language and helping patients (...) and their families to productively engage in the decision-making process. First, patient-centered interviewing techniques can be employed to explore the patient's religious or spiritual beliefs and successfully translate them into choices. Second, and more radically, I suggest that in some more recalcitrant conflicts regarding treatment plans, resolution may require that clinicians become more involved, personally engaging in discussion and disclosure of religious and spiritual worldviews. I believe that both these approaches are supported by rich models of informed consent such as the transparency model and identify considerations and circumstances that can justify such personal disclosures. I conclude by offering some considerations for curbing potential unprofessional excesses or abuses in discussing spirituality and religion with patients. (shrink)

While ethical and empirical interest in so-called secondary variants and incidental findings in clinical genetics contexts is growing, critical reflection on the ethical foundations of the various recommendations proposed is thus far largely lacking. We examine and critique the ethical justifications of the three most prominent disclosure positions: briefly, the clinical geneticist decides, a joint decision, and the patient decides. Subsequently, instead of immediately developing a new disclosure option, we explore relevant foundational ethical values and norms, drawing on the normative (...) and empirical ethical literature. Four ethical signposts are thereby developed to help guide disclosure discussions. These are: respectful sharing of the clinician’s expertise; transparent communication; epistemic modesty; and respect for the embedded nature of the patient. We conclude by considering the most common current disclosure positions in the light of the four ethical signposts. (shrink)

This article examines how people with type 2 diabetes perceive autonomous decision making and which moral capacities they consider important in diabetes nurses' support of autonomous decision making. Fifteen older adults with type 2 diabetes were interviewed in a nurse-led unit. First, the data were analysed using the grounded theory method. The participants described a variety of decision-making processes in the nurse and family care-giver context. Later, descriptions of the decision-making processes were analysed using hermeneutic text interpretation. We suggest first- (...) and second-order moral capacities that nurses specializing in diabetes need to promote the autonomous decision making of their patients. We recommend nurses to engage in ongoing, interactive reflective practice to further develop these moral capacities. (shrink)

This paper reports two cases in Hong Kong involving two native Chinese adolescent cancer patients (APs) who were denied their rights to consent to necessary treatments refused by their parents, resulting in serious harm. We argue that the dynamics of the ‘AP‐physician‐family‐relationship’ and the dominant role Chinese families play in medical decision‐making (MDM) are best understood in terms of the tendency to hierarchy and parental authoritarianism in traditional Confucianism. This ethic has been confirmed and endorsed by various Chinese writers from (...) Mainland China and Hong Kong. Rather than giving an unqualified endorsement to this ethic, based more on cultural sentimentalism than rational moral reasoning, we warn that a strong familism in MDM, which deprives ‘weak’ family members of rights, represents the less desirable elements of this tradition, against which healthcare professionals working in this cultural milieu need to safeguard. Specifically for APs, we suggest that parental authority and family integrity should be re‐interpreted in terms of parental responsibility and the enhancement of children's interests respectively, as done in the West. This implies that when parents refuse to consent to necessary treatment and deny their adolescent children's right to consent, doctors, as the only remaining advocates of the APs' interest, have the duty to inform the state, which can override parental refusal to enable the doctors to fulfill their professional and moral obligations. In so doing the state exercises its ‘parens patriae’ power to defend the defenseless in society and the integrity of the medical profession. (shrink)

Are physicians sometimes morally required to ease caregiver burden? In our paper we defend an affirmative answer to this question. First, we examine the well-established principle that medical care should be centered on the patient. We argue that although this principle seems to give physicians some leeway to lessen caregivers' suffering, it is very restrictive when spelled out precisely. Based on a critical analysis of existing cases for transcending patient-centeredness we then go on to argue that the medical ethos should (...) indeed contain a rule requiring physicians to alleviate caregiver burden under certain circumstances. Finally, we apply our findings to deep brain stimulation (DBS) for Parkinson's disease. We present empirical data from a recent study of DBS indicating that spousal caregivers of Parkinson patients treated with DBS are sometimes deeply troubled by the effects of the therapy and discuss what moral obligations the treating physicians may have in such cases. (shrink)