Una década después de la implantación en España de la hipotermia terapéutica en el recién nacido con encefalopatía hipóxico-isquémica perinatal / Ten years since the introduction of therapeutic hypothermia in neonates with perinatal hypoxic-ischaemic encephalopathy in Spain

Introducción: Se cumple ahora más de una década del inicio de la hipotermia terapéutica (HT)en Espa ̃na, la única intervención neuroprotectora que ha venido a ser práctica estándar en eltratamiento de la encefalopatía hipóxico-isquémica perinatal (EHI). El objetivo de este artículoes ofrecer un panorama actual y presentar las controversias surgidas alrededor de la aplicaciónde esta terapia. Desarrollo: En esta década se ha implantado con éxito la HT en la gran mayoría de los hospitalesterciarios de Espa ̃na y más del 85% de los recién nacidos con EHI moderada-grave reciben estaterapia. Entre los aspectos que pueden mejorar la eficacia de la HT están su inicio precoz dentrode las primeras 6 h de vida y el control de factores comórbidos asociados a la asfixia perinatal. En los pacientes con EHI moderada el inicio después de las 6 h parece mantener cierta eficacianeuroprotectora. Una duración de la HT mayor de 72 horas o un enfriamiento más profundo noofrecen mayor eficacia neuroprotectora y aumentan el riesgo de efectos adversos. Aspectosno bien aclarados aún son la sedación durante la HT y la aplicación de esta intervención a losneonatos con EHI leve y en otros escenarios. La información pronóstica y su marco temporal esuno de los aspectos más desafiantes. Conclusiones: La HT es universal en países con recursos económicos, aunque existen puntos de controversia no resueltos. Si bien es un tratamiento generalizado en nuestro país, falta disponerde dispositivos para el traslado de estos pacientes y su centralización.(AU)

Introduction: More than a decade has passed since therapeutic hypothermia (TH) was introduced in Spain; this is the only neuroprotective intervention that has become standard practice inthe treatment of perinatal hypoxic-ischaemic encephalopathy (HIE). This article aims to providea current picture of the technique and to address the controversies surrounding its use. Development: In the last 10 years, TH has been successfully implemented in the vast majority of tertiary hospitals in Spain, and more than 85% of newborns with moderate or severeHIE currently receive the treatment. The factors that can improve the efficacy of TH includeearly treatment onset (first 6 hours of life) and the control of comorbid factors associated withperinatal asphyxia. In patients with moderate HIE, treatment onset after 6 hours seems to havesome neuroprotective efficacy. TH duration longer than 72 hours or deeper hypothermia do notoffer greater neuroprotective efficacy, but instead increase the risk of adverse effects. Unclarified aspects are the sedation of patients during TH, the application of the treatment in infantswith mild HIE, and its application in other scenarios. Prognostic information and time frame areone of the most challenging aspects. Conclusions: TH is universal in countries with sufficient economic resources, although certainunresolved controversies remain. While the treatment is widespread in Spain, there is a needfor cooling devices for the transfer of these patients and their centralisation.(AU)

Ten years since the introduction of therapeutic hypothermia in neonates with perinatal hypoxic-ischaemic encephalopathy in Spain.

INTRODUCTION: More than a decade has passed since therapeutic hypothermia (TH) was introduced in Spain; this is the only neuroprotective intervention that has become standard practice in the treatment of perinatal hypoxic-ischaemic encephalopathy (HIE). This article aims to provide a current picture of the technique and to address the controversies surrounding its use. DEVELOPMENT: In the last 10 years, TH has been successfully implemented in the vast majority of tertiary hospitals in Spain, and more than 85% of newborns with moderate or severe HIE currently receive the treatment. The factors that can improve the efficacy of TH include early treatment onset (first 6 h of life) and the control of comorbid factors associated with perinatal asphyxia. In patients with moderate HIE, treatment onset after 6 h seems to have some neuroprotective efficacy. TH duration longer than 72 h or deeper hypothermia do not offer greater neuroprotective efficacy, but instead increase the risk of adverse effects. Controversy persists around the sedation of patients during TH, the application of the treatment in infants with mild HIE, and its application in other scenarios. Prognostic information and time frame are one of the most challenging aspects. CONCLUSIONS: TH is universal in countries with sufficient economic resources, although certain unresolved controversies remain. While the treatment is widespread in Spain, there is a need for devices for the transfer of these patients and their centralisation.

Ten years since the introduction of therapeutic hypothermia in neonates with perinatal hypoxic-ischaemic encephalopathy in Spain. / Una década después de la implantación en España de la hipotermia terapéutica en el recién nacido con encefalopatía hipóxico-isquémica perinatal.

INTRODUCTION: More than a decade has passed since therapeutic hypothermia (TH) was introduced in Spain; this is the only neuroprotective intervention that has become standard practice in the treatment of perinatal hypoxic-ischaemic encephalopathy (HIE). This article aims to provide a current picture of the technique and to address the controversies surrounding its use. DEVELOPMENT: In the last 10 years, TH has been successfully implemented in the vast majority of tertiary hospitals in Spain, and more than 85% of newborns with moderate or severe HIE currently receive the treatment. The factors that can improve the efficacy of TH include early treatment onset (first 6hours of life) and the control of comorbid factors associated with perinatal asphyxia. In patients with moderate HIE, treatment onset after 6hours seems to have some neuroprotective efficacy. TH duration longer than 72hours or deeper hypothermia do not offer greater neuroprotective efficacy, but instead increase the risk of adverse effects. Unclarified aspects are the sedation of patients during TH, the application of the treatment in infants with mild HIE, and its application in other scenarios. Prognostic information and time frame are one of the most challenging aspects. CONCLUSIONS: TH is universal in countries with sufficient economic resources, although certain unresolved controversies remain. While the treatment is widespread in Spain, there is a need for cooling devices for the transfer of these patients and their centralisation.

Recomendaciones sobre toma de decisiones y cuidados al final de la vida en neonatología / Recommendations on making decisions and end of life care in neonatology

Los profesionales sanitarios que trabajamos en las unidades de neonatología consideramos que una parte muy importante de nuestro trabajo es el cuidado del recién nacido enfermo y su familia, cuando el neonato presenta una enfermedad incurable o va a morir. El esfuerzo se centra en evitar tratamientos desproporcionados e inútiles, que producen dolor, disconfort y separan al niño de su familia. Estas situaciones suelen ocurrir cuando el neonato tiene una enfermedad incurable, inmadurez extrema con complicaciones o graves malformaciones congénitas. En este documento, el Grupo de Trabajo de Ética de la Sociedad Española de Neonatología realiza una reflexión sobre la toma de decisiones en esta edad de la vida. Se han revisado los aspectos éticos de la limitación de los tratamientos, las bases del proceso de toma de decisiones que deben incluir la información adecuada, la relación de confianza y la deliberación entre padres y profesionales para tomar una decisión correcta. Se destaca la importancia del cuidado de la familia con una situación compleja y de gran sufrimiento, cuando se enfrenta a la recomendación de los profesionales de limitar tratamientos al presentar su hijo una enfermedad de mal pronóstico. La atención al neonato enfermo al final de la vida, y a sus familiares, requiere un considerable esfuerzo, dedicación y formación de todo el personal sanitario. La experiencia cercana de forma reiterada al sufrimiento y a la muerte puede afectar negativamente a los profesionales implicados. Para finalizar, se realiza una reflexión de los aspectos jurídicos de la limitación del tratamiento, la retirada del soporte vital y cómo se deben de realizar y documentar el proceso de decisión, la retirada del soporte vital, la valoración de síntomas y el control del dolor y la sedación(AU)

Healthcare-professionals who work in neonatal units believe that a very important part of their work is the care of sick newborns, and their families if the neonate has an incurable disease or will die. The effort is focused on preventing disproportionate and unnecessary treatments that result in pain and discomfort, and also separate the child from his family. These situations usually occur when the infant has a terminal illness, extreme immaturity with complications, or severe birth defects. The care of the sick neonate care at the end of life, and their families requires a considerable effort, dedication and training of all health personnel. The repeated experience of being close to suffering and death can adversely affect the professionals involved. Finally, there is mention of the legal aspects of limiting treatment, how to perform and document decision process, the withdrawal of life support, assessment of symptoms and pain control and sedation. In this paper, the Ethics Working Group of the Spanish Society of Neonatology reflects on decision making at this time of life. The ethical aspects are reviewed, including, limiting treatment, the basis of decision-making process (that should include adequate information), the relationship of trust, and deliberation between parents and professionals to make the right decision. It highlights the importance of caring for the family in a complex situation and of great suffering, when faced with the recommendation of professionals to limit treatment because their child suffers from a disease with a poor prognosis(AU)

[Recommendations on making decisions and end of life care in neonatology]. / Recomendaciones sobre toma de decisiones y cuidados al final de la vida en neonatología.

Healthcare-professionals who work in neonatal units believe that a very important part of their work is the care of sick newborns, and their families if the neonate has an incurable disease or will die. The effort is focused on preventing disproportionate and unnecessary treatments that result in pain and discomfort, and also separate the child from his family. These situations usually occur when the infant has a terminal illness, extreme immaturity with complications, or severe birth defects. In this paper, the Ethics Working Group of the Spanish Society of Neonatology reflects on decision making at this time of life. The ethical aspects are reviewed, including, limiting treatment, the basis of decision-making process (that should include adequate information), the relationship of trust, and deliberation between parents and professionals to make the right decision. It highlights the importance of caring for the family in a complex situation and of great suffering, when faced with the recommendation of professionals to limit treatment because their child suffers from a disease with a poor prognosis. The care of the sick neonate care at the end of life, and their families requires a considerable effort, dedication and training of all health personnel. The repeated experience of being close to suffering and death can adversely affect the professionals involved. Finally, there is mention of the legal aspects of limiting treatment, how to perform and document decision process, the withdrawal of life support, assessment of symptoms and pain control and sedation.

La enfermera en los cuidados paliativos del recién nacido / No disponible

Objetivos: revisar la bibliografía existente en relación a: 1) las intervenciones enfermeras dirigidas a proporcionar la mejor atención de las necesidades físicas, emocionales y espirituales del recién nacido (RN) y su familia durante el proceso de los cuidados paliativos (CP); y 2) las percepciones enfermeras acerca de sus roles y mecanismos de aceptación durante el cuidado de neonatos que van a fallecer y la fase de duelo. Material y método: búsqueda bibliográfica en IME, INDEX, PUBMEDy CINAHL de trabajos publicados en lengua inglesa y española entre 1997 y 2007. Se utilizaron los descriptores: cuidados paliativos, duelo, neonato, enfermería neonatal, toma de decisiones, competencia cultural. Y sus sinónimos en inglés: palliative care, end-of-life care, hospice care, grief, bereavement, newborn infant, neonatal nursing, making decisions, cultural competence. Asimismo, se consultaron Webs y textos especializados. Resultados: del total de artículos encontrados, se seleccionaron aquellos que abordaban dimensiones temáticas del CP coherentes con los objetivos propuestos y pertinentes desde un punto de vista enfermero. Y se excluyeron los de temática y disciplinas profesionales diferentes. Finalmente, se delinearon cuatro grandes capítulos: CP del RN desde la percepción de la enfermera, rol de la enfermera en el CP del RN (ambiente, confort, y atención a la familia), aspectos transculturales y espirituales del CP y seguimiento de la familia después de la muerte). Conclusiones: la estrategia para mejorar la práctica asistencial enfermera en el CP es explicitar y participar activamente en las diversas dimensiones que se enfrentan durante el mismo. Aunque las enfermeras tienen dificultades para abordar el CP del neonato, están conformes con el rol que desempeñan y se identifican como «defensoras» del RN y como principal soporte para la familia (AU)

Objectives: 1) to explore how nurses can provide their best in physical, emotional and spiritual newborn and family needs in neonatal palliative care; and 2) to examine the perceptions of neonatal nurses concerning their roles and coping strategies during their work with dying newborns and bereavement. Material and method: a search of articles was performed in IME, INDEX, PUBMED and CINAHL, between 1997 and 2007, in Spanish and in English, using the key words «cuidados paliativos, duelo, neonato, enfermería neonatal, toma de decisiones, competencia cultural» AND «palliative care, end-of-life care, hospice care, grief, bereavement, newborn infant, neonatal nursing, making decisions, cultural competence». Also in websites and specialty books. Results: of the many papers found in English we chose those interesting from a nursing point of view, and explored them. Finally, we described four PC components: PC nursing perspectives, nursing role (environment, comfort, family support), transcultural and spiritual care, and follow-up of families after patient death. Conclusions: to make palliative care dimensions explicit is necessary to improve nursing practices. Although nurses have difficulties in approaching neonatal palliative care, they do accept their role and identify themselves as newborn «advocates» and primary family supporters (AU)