RESUMEN
OBJECTIVE: To examine factors associated with parent quality of life during and after neonatal intensive care unit (NICU) discharge among parents of infants with congenital anomalies admitted to the NICU. STUDY DESIGN: This secondary analysis of 2 prospective cohort studies between 2016 and 2020 at a level IV NICU included parents of infants with major congenital anomalies receiving NICU care. The primary outcomes were parent health-related quality of life (HRQL) during the NICU stay and at 3 months post-NICU discharge. RESULTS: A total of 166 parent-infant dyads were enrolled in the study, 124 of which completed the 3-month follow-up interview. During the NICU stay, parent history of a mental health disorder (-13 points), earlier gestational age (-17 points), consultation by multiple specialists (-11 points), and longer hospital stay (-5 points) were associated with lower HRQL. Parents of infants with a neonatal surgical anomaly had higher HRQL (+4 points). At 3 months after NICU discharge, parent receipt of a psychology consult in the NICU, the total number of consultants involved in the child's care, and an infant with a nonsurgical anomaly were associated with lower parent HRQL. Parents of infants with a gastrostomy tube (-6 points) and those with hospital readmission (-5 points) had lower HRQL. Comparing same-parent differences in HRQL over time, parents of infants with anomalies did not show significant improvement in HRQL on discharge home. CONCLUSION: Parents of infants with congenital anomalies reported low HRQL at baseline and at discharge. Parents of infants with nonsurgical, medically complex anomalies requiring multispecialty care represent a vulnerable group who could be better supported during and after their NICU stay.
Asunto(s)
Cuidado Intensivo Neonatal , Calidad de Vida , Niño , Humanos , Lactante , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Padres/psicología , Estudios ProspectivosRESUMEN
OBJECTIVES: To examine whether the order of presenting survival vs disability information, with or without the description of infant neonatal intensive care unit (NICU) experiences would influence treatment choice during hypothetical periviable birth counseling. STUDY DESIGN: An internet sample of childbearing-aged women (n = 839) viewed a pictograph displaying the chances of survival and a pictograph on the chances of disability for a baby resuscitated during the periviable period. The sample was randomized to the order of pictographs and level of description of infant NICU experiences. Participants selected between intensive care or comfort care and reported their personal values. RESULTS: The order of the information influenced treatment choices (P = .02); participants were more likely to choose intensive care if they saw the survival pictograph first (70%) than the disability pictograph first (62%). Level of description of premature infant NICU experiences did not influence treatment choice (P = .92). Participants who valued sanctity of life, autonomy in making decisions, who were more religious, and had adequate health literacy were more likely to choose intensive care. Such participant characteristics had greater explanatory power than the experimental manipulations. CONCLUSIONS: Subtle differences in how information is presented may influence critical decisions. However, even among women with the same values, diversity in treatment choice remains.
Asunto(s)
Consejo , Toma de Decisiones , Viabilidad Fetal , Recien Nacido Extremadamente Prematuro , Madres , Educación del Paciente como Asunto/métodos , Cuidados Críticos , Femenino , Humanos , Unidades de Cuidado Intensivo Neonatal , Autonomía Personal , Embarazo , Calidad de Vida , Religión , Valor de la VidaRESUMEN
OBJECTIVE: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). STUDY DESIGN: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation. RESULTS: Dying infants in the cohort underwent DNR (55%), CPR (21%), and WLST (73%). Gestational age, cause of death, and race were significantly and differently associated with each practice: younger gestational age (<28 weeks) was associated with CPR (OR 1.7, 95% CI 1.5-2.1) but not with DNR or WLST, and central nervous system injury was associated with DNR (1.6, 1.3-1.9) and WLST (4.8, 3.7-6.2). Black race was associated with decreased odds of WLST (0.7, 0.6-0.8). Between centers, practices varied widely at different gestational ages, race, and causes of death. CONCLUSIONS: From the available data on end-of-life care practices for regional NICU patients, variability appears to be either individualized or without consistency.
Asunto(s)
Etnicidad , Edad Gestacional , Enfermedades del Recién Nacido/etnología , Enfermedades del Recién Nacido/mortalidad , Cuidado Intensivo Neonatal/métodos , Cuidado Terminal/métodos , Negro o Afroamericano , Asiático , Reanimación Cardiopulmonar , Causas de Muerte , Bases de Datos Factuales , Femenino , Hospitales Pediátricos , Humanos , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Masculino , Análisis Multivariante , Órdenes de Resucitación , Estudios Retrospectivos , Estados UnidosRESUMEN
OBJECTIVES: To clarify the use of end-of-life comfort medications or neuromuscular blockers (NMBs) in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns > 22 weeks gestation who died in the delivery room or the NICU during 12 months in four NICUs (Chicago, Milwaukee, Montreal, and Groningen). We compared use of end-of-life comfort medications and NMBs. RESULTS: None of the babies who died in the delivery room received comfort medications. The use of opiods (77%) or benzodiazepines (41%) around death was similar in all NICUs. Increasing this medication around extubation occurred most often in Montreal, rarely in Milwaukee and Groningen, and never in Chicago. Comfort medications use had no significant impact on the time between extubation and death. NMBs were never used around death in Chicago, once in Montreal, and more frequently in Milwaukee and Groningen. Initiation of NMB after extubation occurred only in Groningen. CONCLUSION: Comfort medications were administered to almost all dying infants in each NICU. Some, but not all, centers were comfortable increasing these medications around or after extubation. In three centers, NMBs were at times present at the time of death. However, only in Holland were NMBs initiated after extubation.
Asunto(s)
Analgésicos/administración & dosificación , Actitud del Personal de Salud , Reanimación Cardiopulmonar/métodos , Toma de Decisiones/ética , Hipnóticos y Sedantes/administración & dosificación , Bloqueantes Neuromusculares/administración & dosificación , Cuidados Paliativos/métodos , Humanos , Recién Nacido , Unidades de Cuidado Intensivo Neonatal , Inutilidad Médica , Dolor/tratamiento farmacológico , Pronóstico , Estudios Retrospectivos , Estrés Psicológico/tratamiento farmacológicoRESUMEN
OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU during 12 months in 4 NICUs (Chicago, Milwaukee, Montreal, and Groningen). We categorized deaths using a 2-by-2 matrix and determined whether mechanical ventilation was withdrawn/withheld and whether the child was dying despite ventilation or physiologically stable but extubated for neurological prognosis. RESULTS: Most unstable patients in all units died in their parents' arms after mechanical ventilation was withdrawn. In Milwaukee, Montreal, and Groningen, 4% to 12% of patients died while receiving cardiopulmonary resuscitation. This proportion was higher in Chicago (31%). Elective extubation for quality-of-life reasons never occurred in Chicago and occurred in 19% to 35% of deaths in the other units. The proportion of DR deaths in Milwaukee, Montreal, and Groningen was 16% to 22%. No DR deaths occurred in Chicago. CONCLUSIONS: Death in the NICU occurred differently within and between countries. Distinctive end-of-life decisions can be categorized separately by using a model with uniform definitions of withholding/withdrawing mechanical ventilation correlated with the patient's physiological condition. Cross-cultural comparison of end-of-life practice is feasible and important when comparing NICU outcomes.