Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis on the (...) family as a decision-making entity, in some circumstances to the exclusion of a competent patient. Possible tensions may arise between various combinations of patient, family members and healthcare professionals, and healthcare professionals must tread a careful path in navigating family involvement in the decision-making process. These tensions may be about differences of opinion about which treatment option is best and/or on who should have a say or influence in the decision-making process. While some relevant cultural, legal and policy considerations vary from community to community, there are ethical issues that healthcare professionals need to grapple with in balancing the laws and professional codes on decision-making and the ethical principle of respecting patients and their autonomy. This paper will highlight and propose that a partial resolution to these issues may lie in relational understandings of autonomy, which in principle justify interventions by healthcare professionals and family that support patients in decision-making. (shrink)

Book reviewed in this article: Principles of Biomedical Ethics. By Tom L. Beauchamp and James F. Childress.

This new edition of Law and Medical Ethics continues to chart the ever-widening field that the topics cover. The interplay between the health caring professions and the public during the period intervening since the last edition has, perhaps, been mainly dominated by wide-ranging changes in the administration of the National Health Service and of the professions themselves but these have been paralleled by important developments in medical jurisprudence.

The four principles approach to medical ethics plus specification is used in this paper. Specification is defined as a process of reducing the indeterminateness of general norms to give them increased action guiding capacity, while retaining the moral commitments in the original norm. Since questions of method are central to the symposium, the paper begins with four observations about method in moral reasoning and case analysis. Three of the four scenarios are dealt with. It is concluded in the “standard” Jehovah’s (...) Witness case that having autonomously chosen the authority of his religious institution, a Jehovah’s Witness has a reasonable basis on which to refuse a recommended blood transfusion. The author’s view of the child of a Jehovah’s Witness scenario is that it is morally required—not merely permitted—to overrule this parental refusal of treatment. It is argued in the selling kidneys for transplantation scenario that a fair system of regulating and monitoring would be better than the present system which the author believes to be a shameful failure. (shrink)

Crowdfunding websites allow users to post a public appeal for funding for a range of activities, including adoption, travel, research, participation in sports, and many others. One common form of crowdfunding is for expenses related to medical care. Medical crowdfunding appeals serve as a means of addressing gaps in medical and employment insurance, both in countries without universal health insurance, like the United States, and countries with universal coverage limited to essential medical needs, like Canada. For example, as of 2012, (...) the website Gofundme had been used to raise a total of 8.8 million dollars for seventy-six hundred campaigns, the majority of which were health related. This money can make an important difference in the lives of crowdfunding users, as the costs of unexpected or uninsured medical needs can be staggering. In this article, I offer an overview of the benefits of medical crowdfunding websites and the ethical concerns they raise. I argue that medical crowdfunding is a symptom and cause of, rather than a solution to, health system injustices and that policy-makers should work to address the injustices motivating the use of crowdfunding sites for essential medical services. Despite the sites’ ethical problems, individual users and donors need not refrain from using them, but they bear a political responsibility to address the inequities encouraged by these sites. I conclude by suggesting some responses to these concerns and future directions for research. (shrink)

JANET DELGADO RODRIGUEZ | : The concept of vulnerability is central to current developments in bioethics, not only because of its analytic nature, but also due to its capacity for criticism. However, this concept has not been sufficiently developed, neither in the area of moral philosophy nor in bioethics. For this reason, it is necessary to define and analyze the conceptual framework in which the notion of vulnerability has been developed within the scope of bioethics. Thus, the purpose of this (...) paper is to indicate how the concept of vulnerability in the field of bioethics has been developed and what the main problems that derive from this approach are. Secondly, the paper analyzes some of the main philosophical approaches that I consider should be articulated in the expansion of a critical bioethics approach focused on the notion of vulnerability. To address this issue, I analyze the reflections that we find in the work of Martha Fineman, emphasizing the main relevant aspects for bioethics. Finally, I highlight the main implications of a theory of vulnerability for bioethics. | : Le concept de vulnérabilité est au coeur des développements actuels de la bioéthique, non seulement en raison de sa nature analytique, mais aussi en raison de son potentiel critique. Cependant, ce concept n’a pas été suffisamment développé, que ce soit dans le domaine de la philosophie morale ou de la bioéthique. Pour cette raison, il est nécessaire de définir et d’analyser le cadre conceptuel dans lequel la notion de vulnérabilité a été développée en bioéthique. Ainsi, le but de cet article est d’indiquer comment le concept de vulnérabilité a été développé dans le domaine de la bioéthique et quels sont les principaux problèmes découlant de cette approche. Deuxièmement, l’article analyse certaines des principales approches philosophiques qui devraient selon moi être articulées à une approche bioéthique critique centrée sur la notion de vulnérabilité. Pour traiter ce problème, j’analyse la réflexion de Martha Fineman, en soulignant les principaux aspects pertinents pour la bioéthique. Enfin, je souligne les principales implications d’une théorie de la vulnérabilité pour la bioéthique. (shrink)

Patients are increasingly turning to medical crowdfunding as a way to cover their healthcare costs. In the case of Charlie Gard, an infant born with encephalomyopathic mitochondrial DNA depletion syndrome, crowdfunding was used to finance experimental nucleoside therapy. Although this treatment was not provided in the end, we will argue that the success of the Gard family’s crowdfunding campaign reveals a number of potential ethical concerns. First, this case shows that crowdfunding can change the way in which communal healthcare resources (...) are allocated. Second, within the UK’s National Health Service, healthcare is ostensibly not a market resource; thus, permitting crowdfunding introduces market norms that could commodify healthcare. Third, pressures inherent to receiving funds from external parties may threaten the ability of patients-cum-recipients to voluntarily consent to treatment. We conclude that while crowdfunding itself is not unethical, its use can have unforeseen consequences that may influence conceptions of healthcare and how it is delivered. (shrink)