Modos de fallecimiento de los niños en Cuidados Intensivos en España. Estudio MOMUCIP (modos de muerte en UCIP) / Modes of dying of children in Intensive Care Units in Spain: MOMUCIP study

Objetivo: Describir los modos de muerte de los niños en las Unidades de Cuidados Intensivos Pediátricos (UCIP) en España y analizar las características de aquellos que fallecen tras decidir una limitación del esfuerzo terapéutico (LET). Métodos: Estudio retrospectivo multicéntrico mediante revisión de informes de alta de los pacientes fallecidos en 8 UCIPs españolas entre 2011 y 2017. Resultados: Se recogieron 337 fallecimientos, de los cuales 151 (50,7%) ocurrieron durante una decisión de LET, mientras que 114 (33,8%) fueron por reanimación cardiopulmonar indicada pero fallida (FRCP) y 52 (15,4%) por muerte cerebral. Los motivos más frecuentes de ingreso en los niños que luego fallecieron fueron cardíacos (32,6%) y respiratorios (22,6%). El 25,5% (86 casos) habían tenido ingresos previos, 253 (75.1%) padecían enfermedades crónicas y 78 (23,2%) presentaban al ingreso una discapacidad grave. La LET fue más frecuente en estos niños y en aquellos con cáncer. La LET consistió fundamentalmente en no iniciar la RCP en caso de parada cardíaca (45%), retirada de la ventilación mecánica (31.6%) y retirada de fármacos vasoactivos (21.6%). Conclusiones: En el momento actual al menos la mitad de los niños que fallecen en una UCIP en España lo hacen tras una decisión de LET, que es más frecuente en aquellos con ingresos previos, discapacidad grave, enfermedad crónica u oncológica. Los profesionales debemos ser conscientes de esta realidad y prepararnos para compartir las decisiones con las familias y ofrecer la mejor calidad asistencial posible a los niños al final de su vida

Objective: To describe the different types of child deaths in Paediatric Intensive Care Units (PICU) in Spain, and to analyse the characteristics of those dying from a limitation of therapeutic efforts (LET). Method: A multicentre retrospective study by conducted by reviewing the hospital discharge reports corresponding to deceased patients in 8 Spanish PICUs between 2011 and 2017. Results: A total of 337 deaths were recorded, of which 151 (50’7%) occurred after a decision of LET, while 114 (33’8%) were due to an indicated, but failed, cardiopulmonary resuscitation, and 52 (15.4%) were due to brain death. The most common causes of hospital admission for those children that finally died were a heart-related problem (32.6%) or a respiratory problem (22.6%). A total of 86 cases (25.5%) had a previous hospital admission, with 253 cases (75%) suffering from some type of chronical illness, and 78 (23%) had a serious disability at the time of the admission. LET cases were more frequent among these children and those suffering from cancer. The predominant LET type consisted in: not starting the CPR in the event of a cardiac arrest (45%), withdrawal of the respiratory support (31.6%), and withdrawal of vasoactive drugs (21.6%). Conclusions: At the present time, at least half of the children dying in a PICU in Spain die after a LET decision, which is more frequent in those patients with previous hospital admissions, with a serious incapacity, and chronic or oncological disease. Health professionals should be aware of this situation, and be prepared to share decisions with the families, and to offer children at the end of their life the best possible caring quality

[Modes of dying of children in Intensive Care Units in Spain: MOMUCIP study]. / Modos de fallecimiento de los niños en Cuidados Intensivos en España. Estudio MOMUCIP (modos de muerte en UCIP).

OBJECTIVE: To describe the different types of child deaths in Paediatric Intensive Care Units (PICU) in Spain, and to analyse the characteristics of those dying from a limitation of therapeutic efforts (LET). METHOD: A multicentre retrospective study by conducted by reviewing the hospital discharge reports corresponding to deceased patients in 8 Spanish PICUs between 2011 and 2017. RESULTS: A total of 337 deaths were recorded, of which 151 (50'7%) occurred after a decision of LET, while 114 (33'8%) were due to an indicated, but failed, cardiopulmonary resuscitation, and 52 (15.4%) were due to brain death. The most common causes of hospital admission for those children that finally died were a heart-related problem (32.6%) or a respiratory problem (22.6%). A total of 86 cases (25.5%) had a previous hospital admission, with 253 cases (75%) suffering from some type of chronical illness, and 78 (23%) had a serious disability at the time of the admission. LET cases were more frequent among these children and those suffering from cancer. The predominant LET type consisted in: not starting the CPR in the event of a cardiac arrest (45%), withdrawal of the respiratory support (31.6%), and withdrawal of vasoactive drugs (21.6%). CONCLUSIONS: At the present time, at least half of the children dying in a PICU in Spain die after a LET decision, which is more frequent in those patients with previous hospital admissions, with a serious incapacity, and chronic or oncological disease. Health professionals should be aware of this situation, and be prepared to share decisions with the families, and to offer children at the end of their life the best possible caring quality.

Actitudes éticas de los pediatras de Cuidados Intensivos ante pacientes con atrofia muscular espinal tipo 1 / Ethical attitudes of intensive care paediatricians as regards patients with spinal muscular atrophy type 1

INTRODUCCIÓN: La atrofia muscular espinal tipo 1 (AME-1) es una enfermedad progresiva e incurable que plantea problemas éticos entre los profesionales de Pediatría. Nuestro objetivo ha sido conocer las opciones éticas de los pediatras de UCIP ante los pacientes con AME-1 y fracaso respiratorio. MATERIAL Y MÉTODOS: Estudio descriptivo transversal, mediante una encuesta anónima enviada a las UCIP de España y accesible en la web de la Sociedad Española de Cuidados Intensivos Pediátricos. RESULTADOS: Analizamos 124 respuestas (70% mujeres, 51% menores de 40 años, 54% de UCIP con más de 10 camas, 69% con experiencia previa con estos niños y 53% con creencias religiosas). En el último caso atendido, la mayoría de los pediatras optó por la ventilación no invasiva (VNI), realizando después limitación del esfuerzo terapéutico (LET). Ante un hipotético caso futuro, la mitad de los pediatras apoyarían la misma opción (VNI+LET) y el 74% apoyaría la decisión de la familia, aunque no coincidiera con la suya. No se observaron diferencias según la edad, la experiencia previa o el sexo. Los pediatras con creencias religiosas son menos partidarios de la LET inicial. El 63% considera que la calidad de vida de un niño con AME-1 y ventilación invasiva es muy mala. CONCLUSIONES: Ante un niño con AME-1 y fracaso respiratorio, la mayoría de los pediatras de UCIP están a favor de iniciar la VNI y realizar LET cuando dicho soporte no sea suficiente, pero apoyarían la decisión de la familia aunque no estuvieran de acuerdo con ella

INTRODUCTION: Spinal muscular atrophy type 1 (SMA-1) is a progressive and fatal disease that leads to ethical problems for Paediatric professionals. Our objective was to determine the ethical options of Paediatric Intensive Care Unit (PICU) paediatricians as regards a child with SMA-1 and respiratory failure. MATERIAL AND METHODS: A cross-sectional descriptive study was conducted using an anonymous questionnaire sent to PICUs in Spain (which can be accessed through the Spanish Society of Paediatric Critical Care web page). RESULTS: Of the 124 responses analysed, 70% were from women, 51% younger than 40 years, 54% from a PICU with more than 10 beds, 69% with prior experience in such cases, and 53% with religious beliefs. In the last patient cared for, most paediatricians opted for non-invasive mechanical ventilation (NIV) and limitation of therapeutic effort (LET) in case of NIV failure. Confronted with a future hypothetical case, half of paediatricians would opt for the same plan (NIV+LET), and 74% would support the family's decision, even in case of disagreement. Age, prior experience and sex were not related to the preferred options. Paediatricians with religious beliefs were less in favour of initial LET. Less than two-thirds (63%) scored the quality of life of a child with SMA-1 and invasive mechanical ventilation as very poor. CONCLUSIONS: Faced with child with SMA-1 and respiratory failure, most paediatricians are in favour of initiating NIV and LET when such support is insufficient, but they would accept the family's decision, even in case of disagreement

[Ethical attitudes of intensive care paediatricians as regards patients with spinal muscular atrophy type 1]. / Actitudes éticas de los pediatras de Cuidados Intensivos ante pacientes con atrofia muscular espinal tipo 1.

INTRODUCTION: Spinal muscular atrophy type 1 (SMA-1) is a progressive and fatal disease that leads to ethical problems for Paediatric professionals. Our objective was to determine the ethical options of Paediatric Intensive Care Unit (PICU) paediatricians as regards a child with SMA-1 and respiratory failure. MATERIAL AND METHODS: A cross-sectional descriptive study was conducted using an anonymous questionnaire sent to PICUs in Spain (which can be accessed through the Spanish Society of Paediatric Critical Care web page). RESULTS: Of the 124 responses analysed, 70% were from women, 51% younger than 40 years, 54% from a PICU with more than 10 beds, 69% with prior experience in such cases, and 53% with religious beliefs. In the last patient cared for, most paediatricians opted for non-invasive mechanical ventilation (NIV) and limitation of therapeutic effort (LET) in case of NIV failure. Confronted with a future hypothetical case, half of paediatricians would opt for the same plan (NIV+LET), and 74% would support the family's decision, even in case of disagreement. Age, prior experience and sex were not related to the preferred options. Paediatricians with religious beliefs were less in favour of initial LET. Less than two-thirds (63%) scored the quality of life of a child with SMA-1 and invasive mechanical ventilation as very poor. CONCLUSIONS: Faced with child with SMA-1 and respiratory failure, most paediatricians are in favour of initiating NIV and LET when such support is insufficient, but they would accept the family's decision, even in case of disagreement.