In the western healthcare, shared decision making has become the orthodox approach to making healthcare choices as a way of promoting patient autonomy. Despite the fact that the autonomy paradigm is poorly suited to paediatric decision making, such an approach is enshrined in English common law. When reaching moral decisions, for instance when it is unclear whether treatment or non-treatment will serve a child’s best interests, shared decision making is particularly questionable because agreement does not ensure moral validity. With reference (...) to current common law and focusing on intensive care practice, this paper investigates what claims shared decision making may have to legitimacy in a paediatric intensive care setting. Drawing on key texts, I suggest these identify advantages to parents and clinicians but not to the child who is the subject of the decision. Without evidence that shared decision making increases the quality of the decision that is being made, it appears that a focus on the shared nature of a decision does not cohere with the principle that the best interests of the child should remain paramount. In the face of significant pressures toward the displacement of the child’s interests in a shared decision, advantages of a shared decision to decisional quality require elucidation. Although a number of arguments of this nature may have potential, should no such advantages be demonstrable we have cause to revise our commitment to either shared decision making or the paramountcy of the child in these circumstances. (shrink)

“Ethical dilemmas…are rarely simple and stark but are, instead, multifaceted, complex, and gut wrenching for parents and care givers alike.” This is never more the case than when one must treat vulnerable babies who are not, nor ever can be competent to offer us some guidance about that treatment. The ethical problems are heightened when the parents, or the single mother, are incompetent to make decisions themselves, for example, because of drug addiction. In such cases, when the baby is premature (...) and suffering the effects of the drugs the mother has taken, and the mother herself is either no longer available for consultation or so damaged by her own addiction that she is not a reliable decisionmaker, the usual trend In the United States is to initiate treatment and continue until it is virtually certain that the infant will die. (shrink)

This research project investigated the extent to which nurses engage in two important kinds of ethical behaviours: ethical activism (where they try to make hospitals more receptive to nurses’ participation in ethics deliberations) and ethical assertiveness (where they participate in ethics deliberations even when not formally invited). This research probed not only the extent to which nurses engage in these ethical behaviours but also whether this is influenced by professional, training and organizational factors. A random sample of 165 nurses from (...) three major hospitals in Los Angeles provided the data. Regression analyses indicate that both ethical activism and ethical assertiveness are strongly influenced by nurses’ perceptions of the receptivity of hospitals to their inclusion in ethics deliberations. In addition, nurses’ education in ethics is a significant predictor of ethical activism. The findings have important implications for the content of nurses’ ethics training as well as for expanding the boundaries of nurses’ participation in ethics deliberations. The authors define ethics deliberations as specific meetings of a number of people to discuss an ethical issue, such as one regarding the care of a patient. (shrink)

Representatives from eight European countries compared the legal, ethical and professional settings within which decision making for neonates takes place. When it comes to limiting treatment there is general agreement across all countries that overly aggressive treatment is to be discouraged. Nevertheless, strong emphasis has been placed on the need for compassionate care even where cure is not possible. Where a child will die irrespective of medical intervention, there is widespread acceptance of the practice of limiting aggressive treatment or alleviating (...) suffering even if death may be hastened as a result. Where the infant could be saved but the future outlook is bleak there is more debate, but only two countries have tested the courts with such cases. When it comes to the active intentional ending of life, the legal position is standard across Europe; it is prohibited. However, recognising those intractable situations where death may be lingering and unpleasant, Dutch paediatricians have reported that they do sometimes assist babies to die with parental consent. Two cases have been tried through the courts and recent official recommendations have set out standards by which such actions may be assessed. (shrink)

Medical Ethics has many unsung heros and heroines. Here we celebrate one of these and on telling part of her story hope to place modern medical ethics and bioethics in the UK more centrally within its historical and human contex.