Disclosing the diagnosis of HIV in pediatrics.
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Biomedical subjects
Publications and source records attributed to J Frader.
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Advanced technology and better scientific understanding of mechanisms of disease now permit intensive care personnel to extend life beyond what some patients and families consider reasonable, leading, in part, to the "patients' rights" movement and the articulation of legal and moral guidelines for foregoing life support. In the case of pediatrics, commentaries on a few of the topics that have arisen most frequently or have provided the greatest challenge in the authors' experience are provided.
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While procurement of organs from donors who are not "brain dead" does not appear to pose insurmountable moral obstacles, the social practice may raise questions of conflict of interest. Non-heart-beating organ donation opens the door for pressure on patients or families to forgo possibly beneficial treatment to provide organs to save others. The combined effects of non-heart-beating donation and organ shortages at major transplant centers brought about by the 1991 United Network for Organ Sharing (UNOS) local-use organ allocation policy created potential conflicts, including the fact that candidates for organs become potential donors far more frequently than previously. Hospitals with a major emphasis on transplantation have economic and academic interests that may have been hurt by the relative organ shortage. Some may view non-heart-beating organ donation as a way to restore weakened programs and thus unconsciously compromise recognition of problems associated with non-heart-beating donation.
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The Second Opinion staff invited a number of its readers who are physicians to respond to our recent Case Stories section on medical noncompliance, which included a case story by Kevin Coleman and commentary and overview by Arthur W. Frank (Second Opinion 17, no. 3 [January 1992]). Our thanks to those who shared their reflections, a number of which have been excerpted here.
Formal training in clinical ethics must become a central part of residency curricula to prepare practitioners to manage the ethical dimensions of patient care. Residency educators must ground their teaching in an understanding of the conceptual, biomedical, and psychosocial aspects of the important ethical issues that arise in that field of practice. Four aspects of professional competence in clinical ethics provide a useful framework for curricular planning. The physician should learn to: (1) recognize ethical issues as they arise in clinical care and identify hidden values and unacknowledged conflicts; (2) think clearly and critically about these issues in ways that lead to ethically justifiable courses of action; (3) apply those practical skills needed to implement an ethically justifiably course of action; and (4) judge when the management of a clinical situation requires consultation with individuals or institutional bodies with additional expertise or authority. We argue that these practical goals can be accomplished with a relatively modest emphasis on the theoretical aspects of medical ethics.
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The authors explain that several years of effort, by many faculty from a variety of disciplines, were required to expand medical ethics teaching at the University of Pittsburgh School of Medicine beyond the preclinical years. Since 1986, faculty associated with the school's Center for Medical Ethics have begun a comprehensive ethics teaching program for all four years and the residency period; they also are attempting to develop an ethics consultation service. The authors describe the program, its promise and plans, and the significant difficulties involved in establishing and maintaining it, not only problems of long-term funding but of the uninformed and negative attitudes of some students and faculty toward ethics teaching, especially in the clinical setting. Also discussed are the pros and cons of using cases in ethics teaching and the program's approaches to evaluation and to training clinical faculty in clinical ethics issues.
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We review the controversies surrounding the management of patients born with ambiguous genitalia to determine the strengths and weaknesses of recommendations for clinical practice. Traditional practice involves paternalistic decision making by medical practitioners, including the use of deception and/or incomplete communication of facts about the infant's condition and early surgical intervention to make a "definitive" sex and gender assignment. However, modern scientific evidence about sex-role determination refutes earlier theories supporting the appropriateness and need for early decisions. Some intersex individuals have begun to speak out against their treatment, denouncing the secretive approaches and cosmetic surgery without the specific consent of the (mature) affected individuals. They argue for complete disclosure of information regarding the condition and deferral of all surgery until at least adolescence. The traditionalist practices no longer conform to modern legal or ethical standards of care. The position of some intersex activists ignores the potential for psychosocial harm to intersex children and our society's general and strong deference to parental discretion in decisions for and about their children. We argue for a middle way, involving shared decision making with parents of children with intersex and the honoring of parental preferences for or against surgery.