Retirada de asistencia respiratoria en domicilio: toma de decisiones en cuidados paliativos pediátricos / Withdrawal of assisted ventilation in the home: Making decisions in paediatric palliative care

Los cuidados al final de la vida son de interés creciente en pediatría. Al mismo tiempo, el número de niños con enfermedades sin tratamiento curativo pero altamente tecnificado se ha visto incrementado. La creación de programas de atención multidisciplinar las 24 h del día, 7 días a la semana, puede permitir la vida en el domicilio de pacientes que en origen necesitaban hospitalización prolongada. Se deben evitar nuevos ingresos y adecuar el tratamiento en aras de una mayor calidad de vida. Se describen la toma de decisiones y la posterior retirada de ventilación mecánica en un domicilio. Se exponen la enfermedad causal y el evento agudo que condicionó el empeoramiento. Posteriormente, se discute y revisa la toma de decisiones y el manejo clínico hasta el fallecimiento de la paciente

End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients. To adapt the treatment in order to avoid new hospital admissions and to obtain a better quality of life is a desirable objective. The taking of decisions and subsequent withdrawal of mechanical ventilation in the home is presented, along with the underlying disease and the acute event that led to the worsening of the patient. The decision-making and clinical management until the death of the patient is then discussed and reviewed

[Withdrawal of assisted ventilation in the home: making decisions in paediatric palliative care]. / Retirada de asistencia respiratoria en domicilio: toma de decisiones en cuidados paliativos pediátricos.

End-of-life care is of growing interest in Paediatrics. The number of children with diseases being treated using high-technology as palliative treatment has also increased. The creation of multidisciplinary care teams with 24/7 hours home care may prevent prolonged hospital stays in these patients. To adapt the treatment in order to avoid new hospital admissions and to obtain a better quality of life is a desirable objective. The taking of decisions and subsequent withdrawal of mechanical ventilation in the home is presented, along with the underlying disease and the acute event that led to the worsening of the patient. The decision-making and clinical management until the death of the patient is then discussed and reviewed.

Hablar de la muerte al final de la vida: el niño con cáncer en fase terminal / Talking about death to children with cancer

Introducción: El tratamiento de los niños con cáncer incluye un acercamiento multidisciplinario, fundamental en todas las fases del tratamiento y especialmente en la fase paliativa. La información acerca del estado de la enfermedad constituye una herramienta básica. Este estudio pretende explorar el grado de información que tienen los niños durante esta fase acerca de su propia muerte. Material y método: Estudio retrospectivo realizado en 45 pacientes oncológicos fallecidos en el período 2006–2007 en la Unidad de Onco-Hematología y Trasplante del Hospital Infantil Universitario Niño Jesús. Se recogen diferentes variables psicosociales. El concepto de muerte se interpreta de acuerdo con la etapa evolutiva del paciente. Resultados: Se encuentra relación entre la edad que tiene el niño y la información sobre la muerte que recibe, así como diferencia estadísticamente significativa entre la información que sabe el niño y la que reciben sus padres. Los niños de entre 3 y 6 años tienen más información acerca de su propia muerte que los niños de edades comprendidas entre 7 y 11 años. Conclusiones: El grupo de mayor edad es el que más información tiene sobre su situación terminal. Sin embargo, el grupo de 3 a 6 años tiene más información que el grupo de 7 a 11 años. Probablemente, el concepto mágico de la muerte en los niños de 3 a 6 años facilita la comunicación acerca del estado terminal de su enfermedad. La sobreprotección y la dificultad para hablar de la muerte se manifiestan con una disociación entre lo que sabe el niño en fase paliativa y lo que los padres comunican (AU)

Introduction: Paediatric cancer treatment includes a multidisciplinary intervention in all treatment phases, and particularly in the palliative phase. One of the main skills is information. This study tries to explore the level of information that children on palliative care have about their own death. Sample and methods: We retrospectively collected the psychosocial variables of 45 oncology patients who died as inpatients in the Hospital Niño Jesús Hospital (HNJS) between 2006 and 2007. The concept of death is analysed according to each child development stage. Results: We found a relationship between the age of the children and the information they have about their own death, as well as a statistical significance between the information that the child has and the information received from their parents. Children between 3 to 6 years old have more information about their own death than children between 7 to 11 years old. Conclusions: Our results confirmed that the older age group had more information on their imminent death. However children between 3 to 6 years old have more information than children between 7 to 11 years old. Probably as children between 3 to 6 years old have a magical concept of death, it makes it easier to talk about their terminal phase. Over-protection and the difficulty to talk about death shows differences between what children know and what parents tell them about their palliative phase (AU)

[Talking about death to children with cancer]. / Hablar de la muerte al final de la vida: el niño con cáncer en fase terminal.

INTRODUCTION: Paediatric cancer treatment includes a multidisciplinary intervention in all treatment phases, and particularly in the palliative phase. One of the main skills is information. This study tries to explore the level of information that children on palliative care have about their own death. SAMPLE AND METHODS: We retrospectively collected the psychosocial variables of 45 oncology patients who died as inpatients in the Hospital Niño Jesús Hospital (HNJS) between 2006 and 2007. The concept of death is analysed according to each child development stage. RESULTS: We found a relationship between the age of the children and the information they have about their own death, as well as a statistical significance between the information that the child has and the information received from their parents. Children between 3 to 6 years old have more information about their own death than children between 7 to 11 years old. CONCLUSIONS: Our results confirmed that the older age group had more information on their imminent death. However children between 3 to 6 years old have more information than children between 7 to 11 years old. Probably as children between 3 to 6 years old have a magical concept of death, it makes it easier to talk about their terminal phase. Over-protection and the difficulty to talk about death shows differences between what children know and what parents tell them about their palliative phase.

La pérdida en un contexto transcultural: el niño inmigrante con cáncer en fase terminal / No disponible

Introducción: en España, como consecuencia de los fenómenos migratorios ha aumentado la población infantil inmigrante con cáncer. Una intervención a decuada en esta población en la fase terminal requiere la atención y el cuidado activo de los síntomas físicos, psíquicos, sociales y espirituales del paciente y su familia, atendiendo a sus diferencias culturales. Objetivo: conocer las características médicas y psicosociales de los pacientes pediátricos oncológicos inmigrantes en fase terminal y compararlas con la población española. Pacientes y método: se recogen de manera retrospectiva variables epidemiológicas, médicas y psicosociales mediante revisión de datos de la historia clínica e historia psicosocial de los pacientes inmigrantes con cáncer fallecidos entre 1995-2005. Resultados: un total de 27 niños inmigrantes con cáncer con una media de edad de 9 ± 4 fallecieron en nuestra unidad. La mitad de los pacientes fallecidos provenían de América Latina, siendo Ecuador el país mayoritario (29%). El 60% de los pacientes fallecidos presentaban estadios de enfermedad muy avanzado al diagnóstico. Las hemopatías malignas constituyen la causa más frecuente de muerte. Encontramos en la población inmigrante una peor valoración respecto a la población española en las variables situación económica, estructura familiar y alteraciones del comportamiento del paciente. Discusión: la fase terminal del cáncer en la población pediátrica inmigrante constituye una situación de extrema vulnerabilidad. Desde el equipo multidisciplinar debe ofrecerse una respuesta individualizada que atienda factores clínicos, sociales, psicológicos y espirituales. La transculturalización de nuestro país demanda a los profesionales sanitarios paliar esta pirámide de vulnerabilidad mediante una intervención interdisciplinar adecuada y específica (AU)

Introduction: Immigration phenomena in Spain have led to an increase in the immigrant pediatric population with cancer. Adequately caring for this terminally ill population requires actively paying attention to physical, psychic, social, and spiritual complaints in both patients and their families with consideration of their cultural peculiarities. Objective: To understand the medical and psychosocial characteristics of immigrant pediatric end-stage cancer patients, and to compare these to the Spanish population. Patients and method: Epidemiological, medical, and psychosocial variables were retrospectively collected by reviewing data in the medical and psychosocial history of immigrant cancer patients who died in 1995-2005. Results: A total of 27 immigrant children with cancer (mean age 9 ± 4 years) died in our unit. Half of these patients were from Latin America, predominantly from Ecuador (29%). In all, 60% of demised patients had advanced disease at diagnosis. Blood malignancies were the most common cause of death. Our assessment of financial status, family structure, and patient behavior changes showed poorer results in the immigrant versus the Spanish population. Discussion: End-stage cancer in the immigrant pediatric population entails a high-vulnerability situation. A multidisciplinary team must provide personalized responses considering clinical, social, psychological and spiritual factors. Transculturalization in our country demands that health care professionals palliate this vulnerability pyramid by using adequate, specific interdisciplinary interventions (AU)