As an ethicist trained in narrative, I wondered what I could offer Dr. Darcy at this point, two weeks after the events he described. And what might I have offered those involved if they had called an ethics consult at the time? One of this physician's implicit questions was, “How might this have unfolded in a better way?”When difficult choices must be made, how can a narrative approach help? A narrativist focuses less on principles, rules, and law than would a (...) philosopher or a lawyer. This is not to say that we ignore the law or are unaware of bioethical principles. But where do we go from there? Narrative offers a mode of engagement that asks different kinds of questions than those that law or philosophy might ask about moral agency, context, and values. (shrink)

Children: Rights and Childhood is widely regarded as the first book to offer a detailed philosophical examination of children’s rights. David Archard provides a clear and accessible introduction to a topic that has assumed increasing relevance since the book’s first publication. -/- The third edition has been fully revised and updated throughout with a new chapter providing an in-depth analysis of the United Nations Convention on the Rights of the Child (UNCRC) and Part 2 has been restructured to move the (...) reader from general theoretical considerations of children’s rights through to practical issues. This volume is ideal reading for advanced studies across Philosophy, Social Work, Law, Childhood Studies, Politics, and Social Policy. (shrink)

Background: Pediatric guidelines recommend that children and adolescents participate in a developmentally appropriate way in end-of-life decision making. Shared decision making in pediatrics is unique because of the triadic relationship of patient, parents, and physician. The involvement of the patient may vary on a continuum from no involvement to being the sole decision maker. However, the effects of child participation have not been thoroughly studied. The aims of this literature review are to identify studies on end-of-life decision making in pediatrics, (...) to explore patient participation, and to assess the effects of such participation. Methods: Five databases—PubMed, PsycInfo, Medline, CINAHL, and Sociological Abstract—were searched for empirical studies on end-of-life decision making in pediatrics. Selected articles fulfilling the criteria were assessed for type of decision, participants’ characteristics, reports on participation of the minor patient, and outcome. Results: Fifty-seven articles on end-of-life decision making in pediatrics were identified. The majority of papers (n = 43, 75%) investigated parents’ and clinicians’ perspectives, while only 14 articles (25%) included perspectives of children and adolescents. Twenty-two articles (39%) reported some details on various forms of children's participation (e.g., receive information, plan care details, consulted before or after a decision was made). Positive (e.g., respect for patient's preferences) and negative (e.g., conflict due to diverging opinions) effects of children's participation in end-of-life decision making were reported. Conclusions: This systematic review highlights the need for research to identify factors that contribute to a favorable participation of minors in decision-making processes, as well as strategies to solve possible conflicts. More research should take into account the dynamics in the triadic process of decision making and emphasize children and adolescents’ perspectives. A better understanding of how to meaningfully involve children and adolescents in end-of-life decision making could facilitate the practice of patient participation in pediatrics. (shrink)