Search

Objective: Sex assignment to newborns with ambiguous genitalia is controversial. Our objective was to determine the attitudes and practices of pediatric urologists on this subject., Study Design: A survey of fellows in the Urology Section of the American Academy of Pediatrics was completed by 185/228 (81%). The survey referred to two cases, masculinized 46XX congenital adrenal hyperplasia (CAH) and 46XY cloacal exstrophy. Questions referred to sex assignment, timing of surgery, decision making process, and respondent demographics., Results: For masculinized 46XX CAH, virtually all respondents favored female sex assignment. The most important factor was potential fertility. For 46XY cloacal exstrophy, two thirds favored the male sex. The most important factor was potential androgen brain imprinting, whereas in selecting female assignment, it was difficulty creating a functional phallus. Respondent characteristics associated with assigning female sex were longer duration in practice (>15 years) and affiliation with training programs. Most respondents advocated a team approach to decision making with parental involvement and early surgery (<18 months)., Conclusion: Pediatric urologists are in strong consensus about sex assignment for newborns with ambiguous genitalia from CAH, a team approach with parental involvement, and early reconstruction. Yet, there is striking variability in attitudes toward sex assignment for newborns with 46XY cloacal exstrophy, which should be incorporated into the decision-making process with parents.

Objective: We undertook a survey of all practicing neonatologists in New England to determine their attitudes and practices regarding prenatal consultations for infants at the border of viability., Methods: A self-administered anonymous survey, mailed to every practicing neonatologist in the 6 Northeast states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont, explored respondent attitudes and practices with respect to a hypothetical clinical scenario of a prenatal consultation for an infant at the border of viability., Results: Our final sample included 149 surveys from 175 eligible neonatologists, giving a response rate of 85%. Seventy-seven percent of respondents indicated that they thought neonatologists and parents should make the decision jointly to withhold resuscitation. Only 40% indicated that the decision actually is made by both parties. A majority of neonatologists (58%) saw their primary role during the prenatal consultation as providing factual information to the parents. Far fewer (27%) thought that their main role was to assist the parents in weighing the risks and benefits of various management options. A majority of respondents indicated that parental understanding of the mother's current medical situation (96%), desired parental role (77%), and parental prior experience with premature or handicapped children (64%) were frequently or always discussed. However, far fewer respondents reported frequently or always asking about parental interpretations of a "good quality of life" (42%), parental prior experiences with death or dying (30%), and parental religious or spiritual beliefs (25%). Short-term outcomes and complications such as the need for surfactant/respiratory distress syndrome (89%) and the risk of intraventricular hemorrhage (81%) were discussed more extensively than long-term outcomes such as motor delays or cerebral palsy (68%), cognitive delays or learning disabilities (63%), and chronic lung disease (61%). Multivariate logistic regression analysis revealed 2 characteristics that were significant predictors of shared decision-making for the final decision regarding resuscitation in the delivery room for extremely premature infants, ie, believing that the main role of the neonatologist during prenatal consultations is to help parents weigh the risks and benefits of each resuscitation option (odds ratio: 4.1; 95% confidence interval: 1.6-10.9) and having >10 years of clinical experience (odds ratio: 3.6; 95% confidence interval: 1.5-8.8)., Conclusions: Overall, our results showed that neonatologists are quite consistent in discussing clinical issues but quite varied in discussing social and ethical issues. If neonatologists are to perform complete prenatal consultations for infants at the border of viability as described by the latest American Academy of Pediatrics guidelines, then they will be expected to address quality-of-life values more robustly, to explain long-term outcomes, and to incorporate parental preferences during their conversations. Potential barriers to shared decision-making have yet to be outlined.

Objective: To facilitate critical decision making and improve satisfaction with care among families of patients in a pediatric intensive care unit., Design: Prospective observational study followed by a nonrandomized controlled trial of a clinical intervention to identify conflicts and facilitate communication between families and the clinical team., Setting: The pediatric intensive care unit of a Boston teaching hospital., Patients: A total of 127 patients receiving care in the pediatric intensive care unit in 1998-1999 and their families., Interventions: Interviews were conducted with surrogates and decisionally capable older children concerning the adequacy of information provided, understanding, communication, and perceived decisional conflicts. Findings were relayed to the clinical team, who then developed tailored follow-up recommendations., Measurements and Main Results: A survey administered to surrogates at baseline and day 7 or intensive care unit discharge measured satisfaction with care. Information on patient acuity and hospital stay were extracted from medical records and hospital databases. Wilcoxon rank-sum tests and incidence rate comparisons were used to assess the impact of the intervention on satisfaction and sentinel decision making, respectively. Incidence rates of care plan decision making, including decisions to adopt a comfort-care-only plan and decisions to forego resuscitation, were lower among families who received the intervention. The intervention did not significantly affect satisfaction with care., Conclusions: Prospectively screening for and intervening to mitigate potential conflict did not increase decision making or parental satisfaction with the care provided in this pediatric intensive care unit.

Objective: To develop, deploy, and evaluate an intervention designed to identify and mitigate conflict in decision making in the intensive care unit., Design: Nonrandomized, controlled trial., Setting: Seven intensive care units at four Boston teaching hospitals., Patients: A total of 1,752 critically ill patients, including 873 study cases analyzed here., Intervention: Social workers interviewed families of patients deemed at high risk for decisional conflict and provided feedback to the clinical team, who then implemented measures to address the problems identified., Measurements and Main Results: Patient or surrogate satisfaction with intensive care unit care and the probability of choosing a specific plan for treatment in the intensive care unit was studied. Inclusion criteria identified 873 patients at risk for decisional conflict. Thirty-nine percent of the patients in the intervention phase of the study (172 patients) received the intervention. In multivariate analyses, receiving the intervention significantly increased the likelihood of deciding to forgo resuscitation (odds ratio [OR] = 1.81, p =.017), the likelihood of choosing a treatment plan for comfort-care only (OR = 1.94, p =.018), and the likelihood of choosing an aggressive-care treatment plan (OR = 2.30, p =.002). Receiving the intervention did not significantly affect overall satisfaction with the care provided (OR = 0.68, p =.14), satisfaction with the amount of information provided (OR = 0.86, p =.44), or satisfaction with the degree of involvement in decision making (OR = 0.84, p =.54)., Conclusions: Although there was no impact on patient or surrogate satisfaction with care provided in the intensive care unit, the intervention did facilitate deliberative decision making in cases deemed at high risk for conflict. The lessons learned from the experience with this intervention should be helpful in ongoing efforts to improve care and to achieve outcomes desired by critically ill patients, their families, and critical care clinicians.