This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator removed. Despite assurances that the device had saved his life on at least two occasions, and cautions that without it he would almost certainly suffer a potentially lethal cardiac event within 2 years, the patient would not be swayed. Although the patient was judged to be competent, our protracted consultation process lasted more than 8 months as we (...) consulted, argued with, and otherwise cajoled him to change his mind, all to no avail. Justifying our at times aggressive paternalistic intervention helped us to reflect on the nature of autonomy and the dynamics of the legal, moral, and personal relationships in the clinical decision-making process. (shrink)

Inasmuch as unmitigated pain and suffering areoften thought to rob human beings of theirdignity, physicians and other care providersincur a special duty to relieve pain andsuffering when they encounter it. When pain andsuffering cannot be controlled it is sometimesthought that human dignity is compromised.Death, it is sometimes argued, would bepreferred to a life without dignity.Reasoning such as this trades on certainpreconceptions of the nature of pain andsuffering, and of their relationships todignity. The purpose of this paper is to laybare these (...) preconceptions. The duties torelieve pain and suffering are clearly mattersof moral obligation, as is the duty to respondappropriately to the dignity of other persons.However, it is argued that our understanding ofthe phenomena of pain and suffering and theirrelationships to human dignity will be expandedwhen we explore the aesthetic dimensions ofthese various concepts. On the view presentedhere the life worth living is both morally goodand aesthetically beautiful. Appropriate``suffering with'''' another can help to maintainand restore the dignity of the relationshipsinvolved, even as it preserves and enhances thedignity of patient and caregiver alike. (shrink)

BackgroundIn 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment (“liberation therapy”) received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. (...) Policy makers have responded in a variety of ways to the public’s call for action.DiscussionWe present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges.SummaryThis story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making. (shrink)

Feticide, the practice of terminating the life of an otherwise viable fetus in utero, has become an increasingly common practice in obstetric centres around the globe, a concomitant of antenatal screening technologies. This paper examines this expanding practice in light of the concept of human dignity. Although it is assumed from the outset that even viable human fetuses are not persons and as such do not enjoy full membership in the moral community, it is argued that the fact that these (...) are nevertheless human fetuses affords them prima facie moral status. Thus even those who accept a liberal position with regard to therapeutic abortion, should be concerned about these more recent developments. Indeed, how we treat viable human fetuses has implications for our prospective treatment of other human non-persons and could undermine the common human dignity we all share. (shrink)

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information (...) attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs. (shrink)

Narrative theory is a dynamic and evolving field of inquiry that has made tremendous inroads in the medical humanities over the past 40 years. Numerous authors have popularized the idea that “thinking narratively” can produce important insights about the illness experience for physician and patient alike. This paper draws on aspects of narrative theory to emphasize the moral responsibilities that arise when we step into another person's life narrative, becoming a character in her or his story. This has especially significant (...) ethical implications for the physician–patient encounter in that each character in this shared story experiences time somewhat differently. This gives rise to the notion of “slow motion ethics” and a somewhat unique perspective on the moral responsibilities clinicians bear toward their patients. (shrink)

The author examines fundamental problems involved in teaching applied ethics in the educational environment of contemporary university culture. American universities are increasingly turning away from liberal arts education and focusing their efforts on constructing more professionalized degrees and programs. As a result, the education process has become increasingly commodified and ethics courses in universities have been further removed from the liberal arts project of moral development in the classroom. The author argues that ethicists should work to reframe the project of (...) moral education if they hope to retain a central role in the process of teaching ethics. The author suggests a growth model to be installed in the undergraduate curriculum that would reacquaint students with the aims and benefits of learning ethical and moral philosophy. (shrink)

Historically the primary role of the Institutional Review Board (IRB) has been "to assure, both in advance and by periodic review, that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in research" (U.S. FDA, 1996). However, there is much to suggest that IRBs have been unable to fulfil this mandate, particularly in regard to the matter of informed consent. Part of the problem in this regard is that the competing interests of other stakeholders (...) often undermine the IRB's capacity to serve the best interests of research subjects. This paper proposes an alternative view of the role of the IRB. It begins by treating the interests of other stakeholders as legitimate matters of concern for IRBs. Hence the process established to review and monitor human research should be treated as an exercise in social justice in which the interests of all legitimate stakeholders must be represented and considered. A variation of Rawls' (1971) heuristic "the veil of ignorance" is employed to explore the dynamic relationship between knowledge and interests that ensues when the role of the IRB is characterized in this manner. Inadequacies in the informed consent process are taken as illustrative of the inability of IRBs as they are presently construed to attend to the interests of research subjects. The major normative implication of the analysis offered here is that the role of the IRB must be expanded to include the granting of a provisional proxy consent on behalf of prospective research subjects. This provision is necessary, it is argued, if the interests of research subjects are to be fairly assessed by IRBs as a matter of social justice. It is necessary as well to ensure that an adequate standard of informed consent is attained. Somewhat paradoxically it is argued competing sets of interests the IRB must serve, rather than as the primary concern of the IRB. (shrink)