This paper examines an under-explored issue in organ donation: whose decision making authority should be privileged posthumously in the context of known, explicit consent for donation? Current practices in Canada support the family as the ultimate decision maker, despite the existence of legislative support in many Canadian provinces for the potential donor as legitimate decision maker. Arguments for and against privileging the family and the potential donor are identified. Informing the question of “who should decide” are considerations (...) of individual and relational autonomy, distributive and social justice, personhood, and arguments “from distress”. Tensions and competing obligations emerge from an exploration of these considerations that call for further, inclusive dialogue and deliberation on this important organ donation issue. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Living Organ Donors’ Stories: (Unmet) Expectations about Informed Consent, Outcomes, and CareElisa J. Gordon, Symposium EditorKeywordsEthics, informed consent, kidney, liver, living donor, narrative, transplantationLiving donor organ transplantation has become standard treatment for patients with end-stage kidney or end-stage liver disease. Live donors comprised approximately 5,769 (34%) and 247 (4%) of all kidney and liver transplants in 2011, respectively (OPTN/UNOS). The reasons why people donate, the perception that (...) donating does not entail a decision per se, and the attendant fears and anxieties living donors feel about donating, have all been previously well investigated (Lennerling, Forsberg, Meyer, & Nyberg, 2004; Papachristou, Walter, Frommer, & Klapp, 2010). But much less is known about how donors experienced the overall donation process including the donor evaluation, preparation, appreciation of risks, decision-making, informed consent, post-operative, recovery processes, and the impact of donating on all aspects of their life, from their point of view. Thus, a narrative approach is essential for gaining insights into these less well known phenomena.There is good reason to remain concerned about the safety and ethical basis of living donation considering that living donors undergo serious health risks for no direct medical benefit to themselves (Ethics Committee of the Transplantation Society, 2004; Laird, 2012; Neergaard, 2011; Ratner & Sandoval, 2010; Shelton, 2011). The situation raises serious ethical questions specifically about nonmaleficence and informed consent, and more broadly about using people as a means to an end. The absence of long-term information may not undermine a willing donor’s commitment to save a loved one’s life, but is certainly cause for concern among transplant clinicians who want to be sure to disclose information that may be material for donors in order to provide adequate informed consent. In other words, the disjuncture between what transplant clinicians find important to disclose to donors and what prospective donors need to know—which follows along the lines of what Elliot Mishler referred to as the ‘voice of medicine’ versus the ‘voice of the lifeworld’(1984)—seems to complicate donors’ preparation for donation. Donors’ stories are important for addressing these concerns by identifying risks that typically do not get reported in the scientific literature—perhaps owing to a different [End Page 1] conceptualization of what should be construed as noteworthy risks—as well as by demonstrating how personal situations can enhance or detract from the experience overall.This issue of Narrative Inquiry in Bioethics (NIB) affords a unique entrée into both the often heard and unheard stories of living organ donors. A set of topical areas were presented for the authors’ consideration that relate to the donation process in general and the informed consent process more specifically: whether donors were prepared to donate; comprehended what they were told; could have understood the process better, as well as, the impact of donation on health, employment, finances, and personal relationships (Table 1). When soliciting donors’ stories, every effort was made to include a full range of experiences—both good and bad—from a variety of donors: kidney donation, liver donation, adult-to-adult and adult-to-child donation, related, unrelated, directed and anonymous (also known as ‘altruistic’ or ‘good Samaritan’ donors), paired chain exchange, and list exchange (Table 2)—in order to present a balanced perspective on live donation. Additionally, this issue includes a full breadth of stories about the donor experience, ranging from positive to mixed to negative (Table 3). While donors were given tremendous leeway in what stories they told, they were asked to focus their narratives on the lesser known dimensions of donation—the experience of it. While additional stories from liver donors would have helped to underscore common concerns among liver donors, we only received a few. Some of the donors are themselves health care professionals, active in the United Network for Organ Sharing (UNOS) or their local OPO, or have leveraged their experiences to help others by becoming a donor buddy or donor advocate. Given that we received more stories than Click for larger view View full resolutionTable 1.Topical areas to address[End Page 2] Click for larger view View full resolutionTable 2.Forms of Living Donation Click for larger view View... (shrink)

An outstanding feature of the study of nursing ethics is that it raises questions concerning moral virtue, conscience, consistency and character. A considerable section of the literature is devoted to ideas of how best to teach ethics to health professionals. It has been shown that when faced with ethical dilemmas nurses tended to rely on intuition and instinct to resolve them, with little systematic analysis to help the process. Nurses who have been in practice for a number of years may (...) experience particular difficulties in resolving ethical dilemmas, for although they may be able easily to identify ethical problems they may feel powerless to behave appropriately through lack of theoretical background and/or confidence in participating in informed debate. An educational programme was designed to meet the needs of mature registered nurses who were undertaking a post-qualification part-time honours degree in nursing studies. A variety of teaching methods were employed in teaching the nurses. These included discussion, student-led seminars, structured debate and role play. A session which dealt with sudden death and organ donation is described in some detail. Because the topic involved communication between professionals and patients and/or relatives and was linked with ethics, role play was used to explore the dynamics in these areas. The participants were invited to act out the situation as they felt it might occur. Role play highlighted the stress and shock attached to such an experience. Before working through the dynamics of a situation the nurses were conscious of being part of decision-making 'in the cold' and 'in isolation'. As a result of the experiential learning they felt more able to reflect analytically and to participate in discussions in an informed and articulate way. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:News from the President’s Council on BioethicsDiane M. Gianelli (bio) and F. Daniel Davis (bio)Although the President's Council has moved into several new areas of interest during the past year, it also has devoted considerable effort to finalizing several upcoming reports and white papers. In early 2008, the Council will publish a collection of essays on human dignity and bioethics, a report on organ transplantation, and a white (...) paper on "brain death."The Council's report on organ transplantation—now near the end of the drafting and editing phases—has the public as its main audience and, as such, seeks to promote greater understanding of the ethical issues in organ procurement, allocation, and transplantation. The report situates these issues within the contexts of the history of transplantation, the clinical realities of this therapeutic modality, and the current policy framework of state and federal law and regulation.The Council is aware that other bodies—such as the Institute of Medicine—have, in recent years, produced excellent reports on transplantation. The Council's report, however, has a different focus. It explores such foundational issues as the meaning and experience of human embodiment, the philosophy of giving and receiving, and transplantation in relation to the ends and aims of medicine.The report also analyzes the ethics of deceased organ donation, living organ donation, organ allocation, and various proposals for increasing the supply of organs, with a focus on those that call for the replacement of the organ-as-gift philosophy with a market-oriented ethic of selling and buying.In another upcoming publication, the Council revisits the notion of "brain death." The Council did not plan to take on this issue when it began its organ transplantation project. But when researching material for that report, it became clear that—in recent years—some serious criticisms of the neurological standard for declaring death have arisen. Since the vast majority of organs procured from the dead come from "brain dead" patients—that is, those declared dead by the neurological standard—this presented an issue ripe for exploration.The last time a national bioethics body looked at the criteria for determining death was in 1981, when The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research issued "Defining Death," its seminal report that articulated and defended the neurological standard for declaring death. It also proposed a uniform statute for states to adopt based [End Page 397] on that standard. After its publication, states that had not already rewritten their laws to recognize the new neurological standard did so. The Council's white paper on the topic takes a new look at "brain death" in light of the recent evidence and arguments on both sides of the issue.In the Council's last report to the Kennedy Institute of Ethics Journal (December 2006), its upcoming volume on "Dignity" was described. Scholars from a variety of disciplines—and opinions—have written essays on "dignity and bioethics." The volume is ready to go to press.In addition to these documents, the Council, after devoting a number of sessions to the topic over the past couple of years, is considering publication of a white paper on newborn screening, with a probable focus on the benefits, harms, and burdens of mandated screening, and a look at the broader human significance of genetic information. The paper probably also will address the moral precepts that should guide such testing, as well as the precepts that should guide the acquisition and use of the genetic information gained through this process.Venturing into new territory this year, the Council heard from several speakers on "the healing professions" and "the ethical foundations of health care." Both of these topics are the subject of considerable attention and debate in the ethics literature. There is some concern, for example, that medicine and the other healing professions have lost—or are in danger of losing—their moral bearings. And in the controversies surrounding health care reform policies, what is at stake ethically often is obscured, confused, or lacking altogether.Under the rubric of "the professions," the Council heard various dimensions of the issue: the "crisis" in the ethics... (shrink)