End of life in patients attended by pediatric palliative care teams: what factors influence the place of death and compliance with family preferences?

Each year, more than 8 million children worldwide require specialized palliative care, yet there is little evidence available in pediatrics on the characteristics of the end of life in this context. Our aim is to analyze the characteristics of patients who die in the care of specific pediatric palliative care teams. This is ambispective, analytical observational, multicenter study conducted between 1 January and 31 December 2019. Fourteen specific pediatric palliative care teams participated. There are 164 patients, most of them suffering from oncologic, neurologic, and neuromuscular processes. The follow-up time was 2.4 months. The parents voiced preferences in respect of the place of death for 125 of the patients (76.2%). The place of death for 95 patients (57.9%) was at the hospital and 67 (40.9%) was at home. The existence of a palliative care team for over 5 years is more likely to be related to families voicing preferences and their fulfillment. Longer follow-up times by pediatric palliative care teams were observed in families with whom preferences regarding the place of death were discussed and in patients who died at home. Patients who did not receive home visits, when the pediatric palliative care team did not provide full care and when preferences regarding the place of death were not discussed with parents, were more likely to die in the hospital.   Conclusions: Advance planning of end-of-life care is one of the most important aspects of pediatric palliative care. The provision of services by the teams and the follow-up time are related to parents' expressed preferences and the place of death. What is Known: • Various studies have shown how the availability of pediatric palliative care services improves the quality of life of patients and their families while reducing costs. • The place of death is an important factor influencing the quality of end-of-life care for dying people. The increase in palliative care teams increases the number of deaths in the home and having this care available 24/7 increases the probability of dying at home. What is New: • Our study identifies how a longer follow-up time of patients by palliative care teams is significantly associated with death at home and with express and comply with the preferences expressed by families. • Home visits by the palliative care team increase the likelihood that the patient will die at her home and that the preferences expressed by the palliative care team families will be cared for.

Actualización del enfoque paliativo en la Unidad de Cuidados Intensivos Pediátricos / Update on the palliative care approach at the pediatric intensive care unit

Los cuidados paliativos pediátricos pretenden mejorar la atención y la calidad de vida de los niños en situación terminal o con una enfermedad de pronóstico letal. En el contexto hospitalario, las decisiones y tratamientos vinculados al final de la vida se realizan de forma frecuente en las unidades de cuidados intensivos. Es por esto que la integración de los cuidados paliativos en estos servicios constituye una evolución lógica del abordaje clínico del niño grave. Se realiza en este trabajo una actualización acerca de las indicaciones y particularidades del enfoque paliativo en el contexto de los cuidados intensivos pediátricos. Se contemplan el inicio del enfoque paliativo, la toma de decisiones, los aspectos comunicativos, el tratamiento farmacológico, el manejo de síntomas y la sedación paliativa.

Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children. This study provides an update on the indications and characteristics of the palliative care approach in the context of pediatric intensive care. Here we describe palliative care approach initiation, decision-making, communicative aspects, drug treatment, symptom management, and palliative sedation.

Update on the palliative care approach at the pediatric intensive care unit. / Actualización del enfoque paliativo en la Unidad de Cuidados Intensivos Pediátricos.

Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration of palliative care in these units is a logical evolution of the clinical approach to severely ill children. This study provides an update on the indications and characteristics of the palliative care approach in the context of pediatric intensive care. Here we describe palliative care approach initiation, decision-making, communicative aspects, drug treatment, symptom management, and palliative sedation.

Los cuidados paliativos pediátricos pretenden mejorar la atención y la calidad de vida de los niños en situación terminal o con una enfermedad de pronóstico letal. En el contexto hospitalario, las decisiones y tratamientos vinculados al final de la vida se realizan de forma frecuente en las unidades de cuidados intensivos. Es por esto que la integración de los cuidados paliativos en estos servicios constituye una evolución lógica del abordaje clínico del niño grave. Se realiza en este trabajo una actualización acerca de las indicaciones y particularidades del enfoque paliativo en el contexto de los cuidados intensivos pediátricos. Se contemplan el inicio del enfoque paliativo, la toma de decisiones, los aspectos comunicativos, el tratamiento farmacológico, el manejo de síntomas y la sedación paliativa.

Eficacia del Equipo de Cuidados Paliativos Pediátricos de Murcia según la experiencia de los padres / Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents

INTRODUCCIÓN: La atención al final de la vida de los niños debe ser sensible a las necesidades del niño y de su familia. Necesitamos entender la enfermedad desde la perspectiva de los padres que se enfrentan a la muerte de su hijo, para poder mejorar la calidad y guiar el desarrollo de la atención al final de la vida en Pediatría. MÉTODO: Estudio observacional retrospectivo a través de cuestionario, para evaluar las necesidades, experiencias y satisfacción con la atención recibida, de una muestra de padres que perdieron un hijo por una causa previsible, entre junio de 2014 y junio de 2017. Diferenciamos tres grupos de estudio en función del equipo responsable de la atención al final de la vida, y las diferencias entre el grupo atendido por el equipo de cuidados paliativos pediátricos, el grupo atendido por pediatras no paliativistas y el grupo neonatal, son analizadas. RESULTADOS: De las 80 familias elegibles, 64 pudieron ser contactadas y 28 (43,8%) finalmente completaron el cuestionario. Nuestro estudio muestra experiencias positivas y alta satisfacción de los padres con la atención recibida al final de la vida de su hijo. Las puntuaciones más altas tanto en experiencias como en satisfacción, fueron otorgadas por los padres de los niños atendidos por el equipo de cuidados paliativos pediátricos con diferencias estadísticamente significativas en apoyo a la familia, comunicación, toma de decisiones compartida y atención en torno a la muerte (p < 0,05). CONCLUSIONES: Los padres están satisfechos con la atención recibida al final de la vida de sus hijos, pero la intervención de un equipo específico de cuidados paliativos pediátricos mejora la calidad de la atención al final de la vida en pediatría

INTRODUCTION: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. METHOD: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the roup attended by non-palliative paediatricians, and the neonatal group. RESULTS: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05). CONCLUSIONS: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics

La experiencia de enfermedad en los hermanos de niños en cuidados paliativos / The illness experience in siblings of children in palliative care

ANTECEDENTES: El diagnóstico de una patología limitante para la vida en un niño supone un gran impacto para la familia y especialmente para los hermanos, pudiendo tener sobre ellos consecuencias tanto positivas como negativas. OBJETIVO: Se pretende explorar varios aspectos de la vida de los hermanos de pacientes pediátricos en cuidados paliativos. MÉTODO: Elaboración de una metasíntesis de textos de la literatura cuyo interés son los hermanos de los pacientes con una patología limitante para la vida. RESULTADOS: La experiencia de enfermedad del niño despierta en los hermanos una serie de sentimientos, tanto positivos como negativos, que deben considerarse normales y que no significa que tengan dificultades. Pueden sentir miedo y preocupación por la enfermedad del niño y por la posibilidad de su muerte, así como dolor y sufrimiento. Pero también pueden tener sentimientos de aislamiento, soledad y de celos y rivalidad hacia su hermano. Como consecuencia de la reorganización de su vida familiar y social a causa de la enfermedad, los hermanos pueden experimentar pérdidas, pero también ganancias emocionales y físicas. Además, los hermanos tienen necesidad de atención, así como de información acerca de la patología del niño enfermo y de participar en su cuidado. Por otro lado, necesitan desarrollar actividades propias e independientes del niño enfermo. Los hermanos generalmente son resilientes y cuentan con factores protectores para el desarrollo de estrategias adaptativas y habilidades de afrontamiento. Por otro lado, existen factores de riesgo que pueden limitar la adaptación y conducir a problemas emocionales, sociales o escolares, que se deben intentar prevenir mediante intervenciones tempranas psiocológicas, familiares o sociales. CONCLUSIONES: Los profesionales de la sanidad deben estar preparados para atender las necesidades de los hermanos de los pacientes en cuidados paliativos, así como para apoyar y aconsejar a los padres para que observen sus sentimientos y cubran sus necesidades

BACKGROUND: The diagnosis of a life-limiting pathology in a child causes a great impact for the entire family and especially for siblings. OBJECTIVE: This text aims to explore several aspects in the siblings of pediatric patients in palliative care. METHOD: Elaboration of a meta-synthesis of literature texts related to aspects of the siblings of children with a life-limiting pathology. RESULTS: The experience a child's illness may make in his or her siblings may cause various feelings, both positive and negative, which should be considered normal and do not mean that they are having difficulties. They may feel fear and concern about the child's illness and the possibility of his/her death, as well as pain and suffering. But they may also have feelings of isolation, loneliness, and jealousy and rivalry towards their sick sibling. As a result of a reorganization of their family and social life because of the disease, siblings can experiment emotional and physical losses, but also gains. In addition, siblings need care, as well as information about the pathology of the sick child, and to participate in their care. On the other hand, they need to develop their own and independent activities. Siblings are generally resilient and have protective factors for adaptive strategies and coping skills. On the other hand, there are risk factors that can limit adaptation and lead to emotional, social or school problems, which should be prevented by early psychological, family or social interventions. CONCLUSIONS: Health professionals must be prepared to meet the needs of siblings of pediatric palliative care patients to support and advise parents on how to observe their feelings and meet their needs

[Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents]. / Eficacia del Equipo de Cuidados Paliativos Pediátricos de Murcia según la experiencia de los padres.

INTRODUCTION: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. METHOD: A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. RESULTS: Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P<.05). CONCLUSIONS: Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics.

Association of Fluid Overload With Clinical Outcomes in Critically Ill Children With Bronchiolitis: Bronquiolitis en la Unidad de Cuidados Intensivos Pediátricos (BRUCIP) Study.

OBJECTIVES: Increasing evidence supports the association of fluid overload with adverse outcomes in different diseases. To our knowledge, few studies have examined the impact of fluid balance on clinical outcome in severe bronchiolitis. Our aim was to determine whether fluid overload was associated with adverse clinical outcomes in critically ill children with severe bronchiolitis. DESIGN: Descriptive, prospective, multicenter study. SETTING: Sixteen Spanish PICUs. PATIENTS: Severe acute bronchiolitis who required admission from October 2014 to May 2015 were included. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Total fluid intake and output were prospectively recorded during PICU assistance. Fluid balance was measured at 24, 48, and 72 hours after PICU admission. A total of 262 patients were enrolled; 54.6% were male. Median age was 1 month (interquartile range, 1-3 mo). Patients had a positive fluid balance during the first 4 days of PICU admission, reaching a neutral balance on day 4. A positive balance at 24 hours in patients admitted to the PICU with severe bronchiolitis was related with longer stay in PICU (p < 0.001), longer hospital stay (p < 0.001), longer duration of mechanical ventilation (p = 0.016), and longer duration of noninvasive ventilation (p = 0.0029). CONCLUSIONS: Critically ill patients with severe acute bronchiolitis who present a positive balance in the first 24 hours of PICU admission have poorer clinical outcomes with longer PICU and hospital length of stay and duration of invasive and noninvasive mechanical ventilation.

Prospective Multicentre Study on the Epidemiology and Current Therapeutic Management of Severe Bronchiolitis in Spain.

Objective. To determine the epidemiology and therapeutic management of patients with severe acute bronchiolitis (AB) admitted to paediatric intensive care units (PICUs) in Spain. Design. Descriptive, prospective, multicentre study. Setting. Sixteen Spanish PICUs. Patients. Patients with severe AB who required admission to any of the participating PICUs over 1 year. Interventions. Both epidemiological variables and medical treatment received were recorded. Results. A total of 262 patients were recruited; 143 were male (54.6%), with median age of 1 month (0-23). Median stay in the PICU was 7 days (1-46). Sixty patients (23%) received no nebuliser treatment, while the rest received a combination of inhalation therapies. One-quarter of patients (24.8%) received corticosteroids and 56.5% antibiotic therapy. High-flow oxygen therapy was used in 14.3% and noninvasive ventilation (NIV) was used in 75.6%. Endotracheal intubation was required in 24.4% of patients. Younger age, antibiotic therapy, and invasive mechanical ventilation (IMV) were risk factors that significantly increased the stay in the PICU. Conclusions. Spanish PICUs continue to routinely use nebulised bronchodilator treatment and corticosteroid therapy. Despite NIV being widely used in this condition, intubation was required in one-quarter of cases. Younger age, antibiotic therapy, and IMV were associated with a longer stay in the PICU.

Pleurodesis con sangre autóloga: una solución, segura y eficaz para el tratamiento de neumotórax persistente / Autologous "blood patch" pleurodesis: A safe and useful treatment for persistent pneumothorax in children

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