Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care

Abstract

ObjectiveTo explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide.MethodsA cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 57 level III units that offered hypothermia. Forty-one questions were included to explore how the prognosis is established, as well as timing of the decision-making process, and also how ongoing palliative care is offered.ResultsThe main difficulties in EoL decisions lie in the scarce time to make an early, accurate prognosis. Only 20% shared the neurological prognosis with the parents within 72 hours of life, and in only a third of the centres is the nurse present when the prognostic information is given to the family. Almost 50% do not use protocols to order the EoL process. Practically, all centres (91%) reported taking into account the wishes of the parents. However, in 30% the team does not always reach consensus on how the withdrawal process. Specialised psychological support is available in 54% of the hospitals; in more than 50%, interviews are not arranged to examine the grieving process with parents.ConclusionsThere are four areas for improvement in the comprehensive, multidisciplinary approach to the EoL decision in the patient with HIE: (1) the need for EoL and interdisciplinary palliative care protocols, (2) participation of nurses in the process and improvement in the nurse–physician communication, (3) psychological support for parents involved in the EoL decisions and (4) implementation of strategies to give support during the grieving process.

Eligible neonatal donors after circulatory determination of death (Maastricht type III): A national survey of level III NICUs

“…It can help bereaved parents to show their solidarity with the parents of sick children waiting for an organ 6,27,28 . In any case, WLST is a very difficult moment for parents and professionals, and interdisciplinary dialogue and trust are the keys to collaboratively addressing this challenge 8,29 …”

“…6,27,28 In any case, WLST is a very difficult moment for parents and professionals, and interdisciplinary dialogue and trust are the keys to collaboratively addressing this challenge. 8,29 In our study, professionals were concerned about the WLST process. A number of authors expressed concerns about questions such as where WLST would be carried out, the arrangements that to be made for the family to accompany the infant, who would verify cDCD and death, which drugs and procedures could be utilized prior to WLST, and the procedure to be followed if the patient dies at home or does not die.…”

El recién nacido con encefalopatía hipóxico-isquémica perinatal en la era de la hipotermia terapéutica

“…Traslado urgente a centros de referencia que ofrecen una asistencia integral a estos RN incluyendo la HT Estos puntos se engloban dentro del término acuñado como "cadena de neuroprotección cerebral" y que debe ser aplicada bajo lo que conocemos como "código hipotermia". 41,42 La cadena de neuroprotección recoge las etapas claves a desarrollar dentro del periodo ventana que sigue al evento hipóxico-isquémico que se establece como ocurrido alrededor del nacimiento y que se estima en aproximadamente 6 horas (Figura 6). Por ello, la EHI ha dejado de ser una entidad huérfana y en el momento actual el diagnóstico de asfixia perinatal y potencialmente de EHI se trata de una urgencia médica, de ahí el término "código hipotermia", equiparable a otras urgencias médicas como puede ser el "código ictus".…”

“…O si por el contrario sería conveniente el traslado a la unidad neonatal para una monitorización más estrecha. En nuestro país, la mayoría de los centros ingresan a todos los RN con asfixia perinatal, aunque un pequeño porcentaje (25%) si contempla la posibilidad de dejar al RN junto a su madre en caso de recuperación adecuada 41 .…”

“…El examen clínico del estado neurológico permite un rápido triaje de bebés para identificar EHI y la categorización de la gravedad, dentro de las primeras 6 horas de vida, es un aspecto clave de esta cadena de neuroprotección y se realiza utilizando escalas clínicas de graduación. 41 La mayoría de las escalas son nominales y establecen tres categorías de gravedad: leve, moderada o grave. [57][58][59][60] Una dificultad para precisar la categorización de los pacientes radica en que la mayoría de las escalas no tienen una definición operativa para los diferentes ítems que las constituyen.…”