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Objective: To determine the epidemiology of death in PICUs at 5 geographically diverse teaching hospitals across the United States., Design: Prospective case series., Setting: Five U.S. teaching hospitals., Subjects: We concurrently identified 192 consecutive patients who died prior to discharge from the PICU. Each site enrolled between 24 and 50 patients. Each PICU had similar organizational and staffing structures., Interventions: None., Measurements and Main Results: The overall mortality rate was 2.39% (range, 1.85-3.38%). One hundred thirty-three patients (70%) died following the withholding or withdrawal of life-sustaining treatments, 30 (16%) were diagnosed as brain dead, and 26 (14%) died following an unsuccessful resuscitation attempt. Fifty-seven percent of all deaths occurred within the first week of admission; these patients, who were more likely to have new onset illnesses or injuries, included the majority of those who died following unsuccessful cardiopulmonary resuscitation attempts or brain death diagnoses. Patients who died beyond 1-week length of stay in the PICU were more likely to have preexisting diagnoses, to be technology dependent prior to admission, and to have died following the withdrawal of life-sustaining treatment. Only 64% of the patients who died following the withholding or withdrawing of life support had a formal do-not-resuscitate order in place at the time of their death., Conclusions: The mode of death in the PICU is proportionally similar to that reported over the past two decades, while the mortality rate has nearly halved. Death is largely characterized by two fairly distinct profiles that are associated with whether death occurs within or beyond 1-week length of stay. Decisions not to resuscitate are often made in the absence of a formal do-not-resuscitate order. These data have implications for future quality improvement initiatives, especially around palliative care, end-of-life decision making, and organ donation.

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.

Objectives: To assess attitudes of neonatologists toward parental wishes in delivery room resuscitation decisions at the threshold of viability., Study Design: Cross-sectional survey of the 175 practicing level II/III neonatologists in six New England states., Results: Response rate was 85% (149/175). At 24 1/7-6/7 weeks' gestation, 41% of neonatologists considered treatment clearly beneficial, and at 25 1/7-6/7 weeks' gestation, 84% considered treatment clearly beneficial. When respondents consider treatment clearly beneficial, 91% reported that they would resuscitate in the delivery room despite parental requests to withhold. At or below 23 0/7 weeks' gestation, 93% of neonatologists considered treatment futile. Thirty-three percent reported that they would provide what they consider futile treatment at parental request. When respondents consider treatment to be of uncertain benefit, all reported that they would resuscitate when parents request it, 98% reported that they would resuscitate when parents are unsure, and 76% reported that they would follow parental requests to withhold., Conclusions: Variation in neonatologists' beliefs about the gestational age bounds of clearly beneficial treatment and attitudes toward parental wishes in the context of uncertainty is likely to impact the manner in which they discuss options with parents before delivery. This supports the importance of transparency in neonatal decision-making.

Background: In 1976, the first hospital policies on orders not to resuscitate were published in the medical literature. Since that time, the concept has continued to evolve and evoke much debate. Indeed, few initials in medicine today evoke as much symbolism or controversy as the Do-Not-Resuscitate (DNR) order., Objective: To review the development, implementation, and present standing of the DNR order., Design: Review article., Main Results: The DNR order concept brought an open decision-making framework to the resuscitation decision and did much to put appropriate restraint on the universal application of cardiopulmonary resuscitation for the dying patient. Yet, even today, many of the early concerns remain., Conclusions: After 25 yrs of DNR orders, it remains reasonable to presume consent and attempt resuscitation for people who suffer an unexpected cardiopulmonary arrest or for whom resuscitation may have physiologic effect and for whom no information is available at the time as to their wishes (or those of their surrogate). However, it is not reasonable to continue to rely on such a presumption without promptly and actively seeking to clarify the patient's (or surrogate's) wishes. The DNR order, then, remains an inducement to seek the informed patient's directive.

This paper reviews some of the difficulties in implementing perioperative reevaluation of do-not-resuscitate (DNR) orders and suggests several strategies for perioperative DNR policies. Policies should be written, designed and implemented at the level of the institution, and be sufficiently flexible to permit the tailoring of the perioperative DNR order to the individual patient. Policies should unambiguously state that reevaluation is required, delineate responsibilities for reevaluating the DNR order, state all the available options, define the necessary documentation, and list resources for help.