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)

The family is the exemplar community of Chinese society. This essay explores how Chinese communitarian norms, expressed in thick commitments to the authority and autonomy of the family, are central to contemporary Chinese bioethics. In particular, it focuses on the issue of surrogate decision making to illustrate the Confucian family-grounded communitarian bioethics. The essay first describes the way in which the family, in Chinese bioethics, functions as a whole to provide consent for significant medical and surgical interventions when a patient (...) has lost decision-making capacity. It is argued that the practice of not having an established order for surrogate decision makers (e.g., spouse, children, and then parents), as it is done in the United States, reflects the acknowledgment that the family as a social reality cannot be reduced to a stereotype of the appropriate order of default decision makers. This description of the family as being in authority to make surrogate decisions for an incompetent family member is enriched by an elaboration of the differences among the concepts of patient autonomy, family autonomy, and moral autonomy. The Chinese model, as well as the Confucian communitarian life of families, engages a family autonomy that is supported by a Confucian understanding of moral autonomy, rather than individual autonomy. Finally, the issue of possible conflicts between patient and family interests in relation to a patient’s past wishes in the Chinese model is addressed in light of the role of the physician. (shrink)

This paper presents four different understandings of the family and their concomitant views of the authority of the family in pediatric medical decision making. These different views are grounded in robustly developed, and conflicting, worldviews supported by disparate basic premises about the nature of morality. The traditional worldviews are often found within religious communities that embrace foundational metaphysical premises at odds with the commitments of the liberal account of the family dominant in the secular culture of the West. These disputes (...) are substantial and ultimately irresolvable by sound rational argument because of the failure to share common foundational premises and rules of evidence. It is in light of these fundamental disagreements that there is a need to evaluate critically the claims and agenda advanced by the Convention on the Rights of the Child. (shrink)

BackgroundDecision-making in end-stage dementia is a complex process involving medical, social, legal and ethical issues. In ESD, the person suffers from severe cognitive problems leading to a loss of capacity to decide matters regarding health and end-of-life issues. The decisional responsibility is usually passed to clinicians and relatives who can face significant difficulty in making moral decisions, particularly in the presence of life-threatening swallowing problems.AimThis study aimed to understand the decision-making processes of clinical teams and relatives in addressing life-threatening swallowing (...) difficulties in ESD in long-term care in Malta.MethodThe study followed a qualitative approach where six case studies, involving six different teams and relatives of six different patients, were interviewed retrospectively to understand their decision-making in connection with the management of swallowing difficulties in ESD. Data were collected through semistructured interviews with each stakeholder. All data were transcribed and subjected to thematic analysis.ResultsFour themes were identified: the vulnerability of patients in dementia decision-making; the difficult role of relatives in decision-making; the decisional conflict between aggressive care through tube feeding versus oral comfort feeding; a consensus-building decision-making process as ideal to facilitate agreement and respect for patient’s dignity.ConclusionDecision-making to manage swallowing difficulties in ESD is a challenging process, which involves an interpretation of personal values, beliefs, patient preferences, care needs and clinical practice. Better communication between clinicians and relatives in dementia helps promote agreement between stakeholders leading to a care plan that respects the dignity of patients at their end of life. (shrink)

This paper challenges the foundational claim that the human family is no more than a social construction. It advances the position that the family is a central category of experience, being, and knowledge. Throughout, the analysis argues for the centrality of the family for human flourishing and, consequently, for the importance of sustaining family-oriented practices within social policy, such as more family-oriented approaches to consent to medical treatment. Where individually oriented approaches to medical decision-making accent an ethos of isolated personal (...) autonomy family-oriented approaches acknowledge the central social and moral reality of the family. I argue that the family ought to be appreciated as more than a mere network of personal relations and individual undertakings; the family possesses a being that is social and moral such that it realizes a particular structure of human good and sustains the necessary conditions for core areas of human flourishing. Moreover, since the family exists as a nexus of face-to-face relationships, the consent of persons, including adults, to be members of a particular family, subject to its own respective account of family sovereignty, is significantly more amply demonstrated than the consent of citizens to be under the authority of a particular state. As a result, in the face of a general Western bioethical affirmation of the autonomy of individuals, as if adults and children were morally and socially isolated agents, this paper argues that social space must nevertheless be made for families to choose on behalf of their own members. (shrink)

Despite the well-documented social, economic, and adaptive advantages for young children, adolescents, and adults, the traditional family in the West is in decline. A growing percentage of men and women choose not to be bound by the traditional moral and social expectations of marriage and family life. Adults are much more likely than in the past to live as sexually active singles, with a concomitant increase in forms of social isolation as well as in the number of children born outside (...) of marriage. These social shifts are also connected to public policies that provide incentives for individuals to exit the family, leaving behind its social, capital, and economic resources. The individualistic character of the social-democratic egalitarian ideology that underlies the current dominant approaches to health care financing in Western Europe and much of North America, for example, is associated with a decline in family stability. Welfare entitlements, including state-based health care, have made it easier to exit the family, undermining the centrality of the family’s core human relationships. This essay argues for the importance of recognizing the cardinal role and reality of the family and for the importance of family-based health care savings accounts for preserving family integrity, while also providing for sustainable long-term health care reform. (shrink)