The ethical issues around decision making on behalf of infants have been illuminated by two empirical research studies carried out in Scotland. In-depth interviews with 176 medical and nursing staff and with 108 parents of babies for whom there was discussion of treatment withholding/withdrawal, generated a wealth of data on both the decision making process and the management of cases. Both staff and parents believe that parents should be involved in treatment limitation decisions on behalf of their babies. However, whilst (...) many doctors and nurses consider the ultimate responsibility too great for families to carry, the majority of parents wish to be the final arbiters. We offer explanations for the differences in perception found in the two groups. The results of these empirical studies provide both aids to ethical reflection and guidance for clinicians dealing with these vulnerable families. They demonstrate the value of empirical data in the philosophical debate. (shrink)

Background: Lay persons’ judgements of the acceptability of the not uncommon practice of ending the life of a damaged neonate have not been studied. Methods: A convenience sample of 1635 lay people in France rated how acceptable it would be for a physician to end a neonate’s life—by withholding care, withdrawing care, or active euthanasia—in 54 scenarios in which the neonate was diagnosed either with perinatal asphyxia or a genetic abnormality. The scenarios were all combinations of four factors: three levels (...) of maturity or immaturity, three levels of severity of the health problem, three levels of parents’ preference concerning prolonging care and two levels of decision-making (with or without consulting the other caregivers). Analyses: Analyses of variance of the participants’ responses were performed to determine the importance of each factor; the interactions among factors, with methods of ending life and with other patient characteristics; and the differences between asphyxia and genetic abnormality. A cluster analysis was performed to look for groups with different patterns of responses. Results: Lay people assigned most importance to the parents’ request and to the severity of the problem. Except for a small group (12%) always opposed to ending life, they used a simple additive-type rule in integrating the information. Implications: Most of this sample of French lay people are not categorically for or against ending the life of a damaged neonate, but judge its degree of acceptability by adding up those factors that seem most salient to them. (shrink)

Aim To explore the views in non-Western cultures about ending the lives of damaged newborns.Method 254 university students from India and 150 from Kuwait rated the acceptability of ending the lives of newborns with genetic defects in 54 vignettes consisting of all combinations of four factors: gestational age ; severity of genetic defect ; the parents’ attitude about prolonging care ; and the procedure used .Results Four clusters were identified by cluster analysis and subjected to analysis of variance. Cluster I, (...) labelled ‘Never Acceptable’, included 4% of the Indians and 59% of the Kuwaitis. Cluster II, ‘No Firm Opinion’, had little variation in rating from one scenario to the next; it included 38% of the Indians and 18% of the Kuwaitis. In Cluster III, ‘Parents’ Attitude+Severity+Procedure’, all three factors affected the ratings; it was composed of 18% of the Indians and 16% of the Kuwaitis. Cluster IV was called ‘Severity+Parents’ Attitude’ because these had the strongest impact; it was composed of 40% of the Indians and 7% of the Kuwaitis.Conclusions In accordance with the teachings of Islam versus Hinduism, Kuwaiti students were more likely to oppose ending a newborn's life under all conditions, Indian students more likely to favour it and to judge its acceptability in light of the different circumstances. (shrink)

Despite tremendous advances in medical care for critically ill newborn infants, caregivers in neonatal intensive care units still struggle with how to approach those patients whose prognoses appear to be the most grim, and whose treatments appear to be the most futile. Although the practice of passive neonatal euthanasia, from a moral perspective, has been widely condoned, those clinicians and families involved in such cases may still be found legally guilty of child abuse or even manslaughter. Passive neonatal euthanasia remains (...) both a moral dilemma and a legal ambiguity. Even the definition of passive euthanasia remains unclear. This manuscript reviews the basic moral and legal considerations raised by the current practice of neonatal euthanasia, and examines the formal position statements of the American Medical Association and the American Academy of Pediatrics. The paper concludes by emphasising the need, at least in the United States, to clarify the legal status of this relatively common medical practice. (shrink)

The parents of some terminally ill children have reported that being asked to authorise removal of life-sustaining measures is akin to being requested to sign a “death warrant”. This dilemma leaves families not only enduring the grief of losing a loved one, but also with feelings of ambivalence, anxiety and guilt. A straightforward method by which the parents of terminally ill children can entrust the role of healthcare surrogate to the treating physician is presented. The cornerstone of this paradigm is (...) parental awareness that the physician will act in the child’s best interest, even if that means discontinuing life-sustaining measures. The goal is to mitigate parental guilt and fear of misperception, by self and others, of having given up on their child. From a moral standpoint this concept is an appealing option as it conforms to the four basic principles of medical ethics. While laws in the USA and several European nations prevent members of the medical team from taking on the responsibilities of healthcare surrogate for terminally ill patients, formal and informal precedence for this option already exists in France, The Netherlands, Norway, Sweden, Switzerland, and the Canadian province of Manitoba. (shrink)

Patient advocacy has been claimed as a new role for professional nurses and many codes of ethics for nurses state that they act as patient advocates. Nursing education is faced with the challenge of preparing nurses for this role. In this article we describe the results of a study that considered the tendencies of a cohort of nursing students at the Kocaeli University School of Nursing to act as advocates and to respect patients’ rights, and how their capacities to do (...) so changed (or not) as a result of their nursing education. This longitudinal study used a questionnaire consisting of 10 statements relating to patient care. It was performed both at the start (1998) and at the end (2002) of the nursing training. At the beginning of their course 77 students participated; in the study. After four years, only 55 students participated, the reason for this drop in number being unknown. The questions asked nurses if patients should have: the right to receive health care; the right to participate in the decision-making process about their treatment; the right always to be told the truth; and the right to have access to their own medical records. They were also asked: if quality of life should be a criterion for discontinuing treatment; if patients have the right to die and the right to refuse treatment; if patients should be assisted to die or helped to undergo active euthanasia; and if severely disabled newborn babies should be allowed to die. The student nurses demonstrated considerable insight into contemporary nursing issues and were ready to act as patient advocates. Professional responsibility demands that good nurses advocate strongly for patients’ choices. (shrink)