The literature reveals that current nephrology practice in obtaining informed consent for dialysis falls short of ethical and legal requirements. Meeting these requirements represents a significant challenge, especially because the benefits and risks of dialysis have shifted significantly with the growing number of older, comorbid patients. The importance of informed consent for dialysis is heightened by several concerns, including: () the proportion of predialysis patients and patients on dialysis who lack capacity in decision making and () whether older, comorbid, and frail patients understand their poor prognosis and the full implications to their independence and functional status of being on dialysis. This article outlines the ethical and legal requirements for a valid informed consent to dialysis: () the patient was competent, () the consent was made voluntarily, and () the patient was given sufficient information in an understandable manner to make the decision. It then considers the application of these requirements to practice across different countries. In the process of informed consent, the law requires a discussion by the physician of the material risks associated with dialysis and alternative options. We argue that, legally and ethically, this discussion should include both the anticipated trajectory of the illness and the effect on the life of the patient with particular regard to the outcomes most important to the individual. In addition, a discussion should occur about the option of a conservative, nondialysis pathway. These requirements ensure that the ethical principle of respect for patient autonomy is honored in the context of dialysis. Nephrologists need to be open to, comfortable with, and skillful in communicating this information. From these clear, open, ethically, and legally valid consent discussions, a significant dividend will hopefully flow for patients, families, and nephrologists alike.
A B S T RA C TThis is the second article of a two-part review of the literature relating to family group conferences (FGCs); it explores outcomes and challenges in implementing FGCs. The complex data relating to outcomes, drawing on a range of national contexts, is presented. The challenges of researching outcomes and the role of longitudinal and randomized, controlled trials are considered. The article concludes with a discussion of the implementation of FGC policy and practice in the contemporary context.
A B S T RA C TThis is the first part of a two-part review of the literature, policy and practice relating to family group conferences (FGCs). This first paper explores the background, the global policy context, the theoretical foundations and the process of undertaking FGCs. The literature is extensive in relation to these elements of FGCs, unlike the limited literature relating to outcomes, which is examined in the second part of this review. In the subsequent review, we examine the issue of outcomes, research findings and explore future challenges in implementing FGCs.
Science festivals enable scientists to engage with publics, but format design reflecting different engagement models is contested. This study gathered mixed-methods data over 3 years (2011-2013) from on-site surveys (N = 661) of a health science festival, exploring audience preferences for dissemination or dialogue formats (lectures, discussions, community expo, lab experiments, and day out). Irrespective of time, age-group, or gender, lectures were significantly ranked the main attraction (76.8%), most highly attended (89.1%), and most useful format (83.8%). Thematic analysis revealed five themes exploring nonformal learning motivations for audiences, highlighting that knowledge/understanding acquisition is perceived as empowering greater health literacy.
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