Journal of paediatrics and child health
-
Paediatric research is essential for improving health outcomes of children. Waiting for adult studies before conducting paediatric studies will prolong the denial of effective treatment for children. ⋯ These include the function and the value of a child's assent and the criteria that should guide a proxy in making decisions about a child's involvement in research, offering payment to children for research participation and acceptable levels of risk for paediatric research. Justice demands that children not be denied the benefits of research, and it is the role of the paediatric medical community to advocate not only for more research for children but also to ensure that the research conducted is of the highest quality.
-
J Paediatr Child Health · Sep 2011
Ethics at the end of life: who should make decisions about treatment limitation for young children with life-threatening or life-limiting conditions?
It is now ethical orthodoxy that parents should be involved in the decision-making about their children's health care. This extends to decisions about whether to continue or to limit life-sustaining medical treatment for a child with a life-limiting or life-threatening condition. What remains contested and uncertain is the extent and nature of parental involvement, especially in this emotionally charged situation. ⋯ In this paper, we review the empirical evidence currently available on these questions, in relation to parents of infants and young children. Overall, the literature suggests that parents do want to be involved and do not suffer adverse psychological consequences from their involvement. However, the crucial ethical implication of the evidence is that the level and nature of parental involvement in decision-making should be negotiated with the parents in each case, because parents have a range of different views about taking final responsibility for decisions.
-
J Paediatr Child Health · Sep 2011
Improved neonatal survival and outcomes at borderline viability brings increasing ethical dilemmas.
With improvements in neonatal intensive care over the past five decades, the limits of viability have reduced to around 24 weeks' gestation. While increasing survival has been the predominant driver leading to lowering the gestation at which care can be provided, these infants remain at significant risk of adverse long-term outcomes including neuro-developmental disability. ⋯ Inevitably, these ethical dilemmas need to consider the uncertainty of the long-term prognosis and challenges surrounding providing or withdrawing active treatment. Further reduction in the gestational age considered for institution of intensive care will need to be guided by short- and long-term outcomes, community expectations and the availability of sufficient resources to care for these infants in the neonatal intensive care unit and beyond.
-
You might well say, 'Why would you want to write about your son's death?' And in response I may ask, 'Why do you want to read it?' Perhaps there are no correct answers to our questions, except to say that the only way we learn it, ethically, through the experiences of others as we witness their suffering. Although, for the most part, this journey would leave me feeling professionally abandoned, there were still times of joy, hope and love. I invite you to take this journey with me.