Seminars in pediatric neurology
-
Medical futility concerns itself with decisions regarding treatments that are of minimal potential benefit to the patient. The concept of futility has evolved with the practice of medicine and consensus has been elusive. ⋯ Though frequently intermixed, futility and rationing are separate matters, with futility reflecting individual decisions taken at the bedside, whereas rationing represents decisions of publicly determined health policy. Objective, uniformly applicable guidelines regarding futility will likely be difficult to achieve and thus local efforts must be focused on implementing mechanisms to minimize and resolve inevitable disputes between patients, families, and caregivers.
-
The ethical conduct of clinical research in children is challenged by the inherent vulnerability of this population. Children are both incompetent decision makers and have a right to custody (ie, protection), yet they must also be participants in research that will advance the care of pediatric disorders or they risk becoming "therapeutic ophans." Consensus guidelines exist for the conduct of clinical research in children. Aspects of consent, risk-benefit ratios, fair subject selection, and respect for subjects have child-specific concerns. It is only by explicitly recognizing and addressing these child-specific concerns can the conduct of pediatric clinical research achieve and maintain a high level of ethical propriety.
-
Informed consent remains an important but unpopular topic among physicians. It has the ring of a bothersome legal technicality coupled with a time-consuming, procedural requirement that must be obtained principally to satisfy external agencies and avoid malpractice suits. In fact, consent always has been an essential element in the physician-patient relationship, more important as an ethical duty than as a legal requirement, and continues to represent the most important forum of communication between patients and physicians. ⋯ Legal issues of consent are presented and how to resolve conflicts of assent, consent, and refusal between children and parents is discussed. Then, overriding parental refusals of treatment and consent issues in genetic testing are mentioned. Finally, there is a discussion of consent and assent by children for participation in clinical research studies.