Ethical issues in the care of the neurologically devastated infant.

The debate surrounding neurologically devastated newborns, whether due to severe prematurity or genetic malformations, has continued for over 40 years. Duff and Campbell (1973) first discussed allowing these children to die in the 1970s. In the 1980s, others fought to make sure these children with disabilities were afforded all the rights of other children. Recently, some commentators have advocated for withdrawal of therapies and even euthanasia in the Netherlands. Who is right? What are the ethical principles that should be followed? What decisions are appropriate for distraught parents to make? This chapter reviews international views, laws, and guidelines surrounding the therapies and limitations of care for these imperiled newborns. An ethical argument is presented for how to determine best interests for these special children utilizing the best interest standard. Parents and physicians need to use their individual expertise and values to work together to determine each individual child's best interests. Physicians may have to carry the burden for making final determinations to alleviate the guilt families may have in deciding to limit therapies.

Parents' reactions to participating in interviews about end-of-life decision making.

BACKGROUND: Although in-depth interviewing is well suited to studying the sensitive topic of end-of-life decision making, no reports have been published assessing the effects on parents of participating in interviews regarding end-of-life decision making for critically ill children. OBJECTIVE: To examine the reactions of pediatric intensive care unit (PICU) patients' parents to interviews on end-of-life decision making for their child. METHODS: We conducted semistructured interviews on end-of-life decision making with PICU patients' parents from two tertiary care PICUs. We approached 117 parents of 102 patients. Seventy-four parents (63%) of 69 patients participated. RESULTS: Forty-three parents (61%) described the interview as "a good experience," 20 (29%) as "a neutral experience," and 1 (1%) as "a bad experience." The parent who judged the interview negatively stated that, "It bothers me a little bit because my son is [out] there having difficulties and I'm in here and not out there." Fifty-four of 59 parents (92%) said they would participate in another similar interview. Most parents (92%) felt the medical community should continue research on end-of-life decision making. Themes identified from the responses included: emotional reaction to the interviews; exposure to end-of-life decision-making issues; impact on parents' views; and impact on future end-of-life decision making. Parents' comments suggested that many perceived the interviews as beneficial. CONCLUSIONS: This study demonstrates the willingness of many parents of critically ill children to participate in study interviews regarding end-of-life decision making, a topic that most parents felt was important and warranted more research.

Staphylococcus aureus sepsis and the Waterhouse-Friderichsen syndrome in children.

Staphylococcus aureus has increasingly been recognized as a cause of severe invasive illness. We describe three children who died at our institution after rapidly progressive clinical deterioration from this infection, with necrotizing pneumonia and multiple-organ-system involvement. The identification of bilateral adrenal hemorrhage at autopsy was characteristic of the Waterhouse-Friderichsen syndrome, a constellation of findings usually associated with fulminant meningococcemia. The close genetic relationship among the three responsible isolates of S. aureus, one susceptible to methicillin and two resistant to methicillin, underscores the close relationship between virulent methicillin-susceptible S. aureus and methicillin-resistant S. aureus isolates now circulating in the community.