Traditionally, physicians and parents made decisions about children’s health care based on western practices. More recently, with legal and ethical development of informed consent and recognition for decision making, children are becoming active participants in their care. The extent to which this is happening is however blurred by lack of clarity about what children — of diverse levels of cognitive development — are capable of understanding. Moreover, when there are multiple surrogate decision makers, parental and professional conflict can arise concerning (...) children’s ‘best interest’. Giving children a voice and offering choice promotes their dignity and quality of life. Nevertheless, it also presents with many challenges. Case studies using pseudonyms and changed situational identities are used in this article to illuminate the complexity of ethical challenges facing nurses in end-of-life care with children and families. (shrink)

The treatment decisions of competent adults, especially treatment refusals, are generally respected. In the case of minors something turns on their age, and older minors ought increasingly to make their own decisions. On the other hand, parents decide on behalf of infants and young children. Their right to do so can best be justified in terms of the importance of preserving intimate family relationships, rather than in terms of the child's best interests, although the child's best interests will most often (...) follow from this arrangement. Nevertheless, there are and ought to be legal, ethical, and financial constraints on parental decision making. (shrink)

This study examined the quality of children's assent to a clinical trial. In subjects younger than 9 years of age, understanding of most aspects of the study was found to be poor to non-existent. Understanding of procedures was poor in almost all subjects. In addition, voluntariness may have been compromised in many subjects by their belief that failure to complete the study would displease others. If the fact that a child's assent has been obtained is used to justify the exposure (...) of that child to the potential harm of a non-therapeutic blood sample, the assent must be meaningful. In the nutrition study observed here, the quality of the assent of children younger than 9 years of age was very poor. The assent therefore did not provide a valid justification for requesting a blood sample from these children. This study indicates that most children younger than 9 years of age cannot be expected to consent or assent to clinical research in a meaningful way. The current age of 7 years for initiating assent (in addition to parental consent) is possibly not appropriate and should be reconsidered. (shrink)