Procedures involving limitation of therapy are frequent, especially in the neonatal unit. Diagnosis of brain death and withdrawal of advanced life support are, nevertheless, rare. Decisions to grant do-not-resuscitate orders are generally mate late, especially in the intensive care unit. In this sample procedures for full participation in decisions and for recording decisions were imperfect.
Objective: To study the profile of care provided to pediatric patients suffering fatal outcomes at a university hospital, including: description of models, comparisons between units, associated factors, participants involved and records of decisions made.Methods: Cross-sectional study. One of the investigators reviewed the medical and nursing records of deceased patients. Interviews were held and questionnaires filled out with the care team members over a period of 12 months (May 1, 2002 to April 30, 2003.
Results:The study included 106 cases. The most frequent treatment patterns at the hospital were: withholding advanced life support (51.9%) and unsuccessful cardiopulmonary resuscitation (44.3%). The decision to make a do-not-resuscitate order occurred later in the intensive care unit (p < 0.05). The restricted care category was more prevalent in the neonatal unit and among patients with chronic diseases that limit survival (p < 0.05). The professionals that most often participated in the decision-making process were the unit s treating physician and resident (52.8%) and the medical team (31.1%). Parents or guardians were observed to have been involved in 20.8% of cases. For the entire hospital, seven cases (6.6%) of ambiguous or discordant cardiopulmonary resuscitation procedures were found.Conclusions: Procedures involving limitation of therapy are frequent, especially in the neonatal unit. Diagnosis of brain death and withdrawal of advanced life support are, nevertheless, rare. Decisions to grant do-not-resuscitate orders are generally mate late, especially in the intensive care unit. In this sample procedures for full participation in decisions and for recording decisions were imperfect.
J Pediatr (Rio J)
OBJETIVOS: conhecer a percepção dos pais para o diagnóstico de leucemia em seus filhos. MÉTODOS: pesquisa qualitativa tendo como referencial a teoria das representações sociais ancorada na tradição da sociologia compreensiva. Utilizou-se entrevista semi estruturada para a coleta de dados. Foram entrevistados 20 pais de crianças e adolescentes com diagnóstico de leucemia linfóide aguda (LLA). Para análise dos dados empregou-se a técnica de "análise do conteúdo". As diretrizes de humanização da assistência e princípios bioéticos foram os eixos norteadores da análise dos dados. RESULTADOS: os pais recordaram-se claramente da progressão dos sintomas da doença até o diagnóstico. A palavra leucemia foi associada ao câncer e à morte. Dificuldades relacionadas à escuta dos sintomas, a particularidades clínicas da leucemia e ao encaminhamento no sistema de saúde foram os principais motivos para a demora do diagnóstico definitivo. Destacam-se as peregrinações por diferentes locais, perda da resolubilidade, gastos desnecessários, desgaste emocional e atraso nas ações de saúde. CONCLUSÕES: o câncer envolve valores culturais sobre a morte, cuja carga simbólica é maior no caso da criança. A busca do diagnóstico da leucemia pelos pais é exemplo emblemático do tortuoso caminho percorrido quando o mal que acomete a criança não se enquadra no rótulo das doenças "comuns".
"Criança não pode esperar": a busca de serviço de urgência e emergência por mães e suas crianças em condições não urgentes "Children cannot wait": why mothers seek urgency and emergency care services for their children in non-urgent situations
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