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To the Editor.-- We read with great interest the article "ACC/AHA/AAP Recommendations for Training in Pediatric Cardiology." (1) We would like to comment specifically on the section that described advanced [...]

OBJECTIVE. Despite recognition that dying children and their families have unique palliative care needs, there has been little empirical inquiry of parent perspectives to improve the quality of end-of-life care and communication. The purpose of this study was to identify and describe the priorities and recommendations for end-of-life care and communication from the parents' perspective. METHODS. This was a qualitative study based on parental responses to open-ended questions on anonymous, self-administered questionnaires, conducted at 3 pediatric ICUs in Boston, Massachusetts. Fifty-six parents whose children had died in PICUs after withdrawal of life support participated in this study. We measured parent-identified priorities for end-of-life care and communication. RESULTS. Parents identified 6 priorities for pediatric end-of-life care including honest and complete information, ready access to staff, communication and care coordination, emotional expression and support by staff, preservation of the integrity of the parent-child relationship, and faith. CONCLUSIONS. Parental priorities and recommendations offer simple yet compelling guidance to improve pediatric end-of-life clinical practice and research. Key Words end-of-life care, pediatric intensive care, communication, family-centered care, pediatric palliative care, THE DEATH OF a child is an unexpected and unimagined event for most families. Even families of children who are born with life-shortening conditions cannot truly be prepared, because the [...]

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 decisionmaking 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. Pediatrics 2005;116:407-413; infants at the border of viability, extremely premature infant, shared decision-making, physician attitudes, ethics, parental involvement, resuscitation, survey. ABBREVIATION. AAP, American Academy of Pediatrics., The gravity and complexity of decision-making for infants considered to be at the border of viability have long been recognized. The increased survival rate for these extremely premature infants has [...]

Objective. To determine the frequency, types, sources, and predictors of conflict surrounding the care of pediatric intensive care unit (PICU) patients with prolonged stay. Setting. A tertiary care, university-affiliated PICU in Boston. Participants. All patients admitted over an 11-month period whose stay exceeded 8 days (the 85th percentile length of stay for the PICU under study), and intensive care physicians and nurses who were responsible for their care. Methods. We prospectively identified conflicts by interviewing the treating physicians and nurses at 2 stages during the patients' PICU stay. All conflicts detected were classified by type (team-family, intrateam, or intrafamily) and source. Using a case-control design, we then identified predictors of conflict through bivariate and multivariate analyses. Results. We enrolled 110 patients based on the length-of-stay criterion. Clinicians identified 55 conflicts involving 51 patients in this group. Hence, nearly one half of all patients followed had a conflict associated with their care. Thirty-three of the conflicts (60%) were team-family, 21 (38%) were intrateam, and the remaining 1 was intrafamily. The most commonly cited sources of team-family conflict were poor communication (48%), unavailability of parents (39%), and disagreements over the care plan (39%). Medicaid insurance status was independently associated with the occurrence of conflict generally (odds ratio = 4.97) and team-family conflict specifically (odds ratio = 7.83). Conclusions. Efforts to reduce and manage conflicts that arise in the care of critically ill children should be sensitive to the distinctive features of these conflicts. Knowledge of risk factors for conflict may also help to target such interventions at the patients and families who need them most. Pediatrics 2003;112:553-558; physician-patient relations, conflict (psychology), intensive care, withholding treatment, communication barriers., Few areas of medicine are as emotionally charged for the individuals involved as the care of critically ill children. Families face important treatment decisions at a time of grief, stress, [...]

Objective. To determine whether there is variability in the attitudes and practices of physicians regarding treatment of respiratory failure in children with spinal muscular atrophy type I (SMA type I) and, if so, whether this variation is associated with professional training. Methods. This was a descriptive, cross-sectional survey mailed to a randomly selected subset of the Child Neurology Society, pediatric members of the Society of Critical Care Medicine and to the membership of the Pediatric Interest Section of the American Academy of Physical Medicine and Rehabilitation. A scenario of a child with SMA type I in respiratory distress was followed by questions that explored practices and attitudes regarding mechanical ventilation. Results. Fifty-seven percent of intensivists (75 of 132), 39% physiatrists (61 of 155), and 34% of neurologists (61 of 155) responded. Specialists differed as to whether they offered and/or recommended respiratory support to patients with SMA type I. Intensivists were less likely to offer and recommend tracheostomy than physiatrists. Intensivists were also significantly less likely than physiatrists to agree with statements supporting the ethical necessity of noninvasive mechanical ventilation (NIMV) and intubation in the setting of an acute respiratory illness, and NIMV and tracheostomy in the setting of chronic respiratory failure. Although parallel differences were found between physiatrists and neurologists regarding their attitudes toward mechanical ventilation, no significant differences were detected between intensivists and neurologists. Finally, physicians who reported that a high percentage of their patients with SMA type I received "comfort care only" also tended to view mechanical ventilation, ie, use of NIMV for chronic respiratory failure, use of intubation for an acute respiratory infection, and use of tracheostomy for chronic respiratory failure as an unreasonable intervention in most circumstances. Conclusions. We found a wide variation in physician practice regarding the mechanical ventilation of patients with SMA type I. This study suggests a wide variation not only in what is recommended but also in what is actually offered to families of these children. Furthermore, the study suggests that physician training and attitudes affect recommendations regarding mechanical ventilation and ultimately family decision making. Pediatrics 2002;110(2). URL: http://www.pediatrics.org/ cgi/content/full/110/2/e24; spinal muscular atrophy, Werdnig-Hoffman disease, mechanical ventilation, physician attitudes, ethics, family decision making, survey.