RESUMO
AIM: The decrease in childhood mortality, the growing clinical complexity and the greater technification of intensive care units have changed the circumstances of death of paediatric patients. The aim of this study is to describe the context of death and end-of-life decision-making. METHODS: Single-centre, retrospective, observational study of deaths in inpatients or home hospitalised children under 18 years old between 2011 and 2021. Demographic data, pathological history and circumstances of death were obtained from the medical record. The whole study period was divided into two halves for the analysis of the temporal trends. RESULTS: A total of 358 patients died, 63.2% under the age of 1 year old; 86.9% had underlying life-limiting illnesses and 73.2% died in the intensive care unit, with no differences between the two time periods. Death at home was significantly higher in the second study period (3.8% vs. 9%). A total of 20.1% died during advanced cardiopulmonary resuscitation. Life-sustaining treatment was withheld or withdrawn in 53.6%, with no differences between the time courses. Life-sustaining treatment was withheld mainly in patients with neurological, metabolic and oncological conditions, and less frequently in patients with cardiovascular or respiratory diseases or who were previously healthy. Most patients coded as palliative care (PC) or followed up by PC teams had an advance care plan (ACP) recorded, while in the others it was infrequent. PC coding, following by PC teams and ACP recording increased in the last years of the study. CONCLUSIONS: Death of children in our setting usually occurs in relation to complex underlying pathology and after the decision of withdrawing or withholding life-sustaining treatment. In this context, PC and ACP acquire greater importance. In our study, PC involvement resulted in better documentation of ACP and PC coding.
Assuntos
Criança Hospitalizada , Assistência Terminal , Humanos , Criança , Adolescente , Lactente , Estudos Retrospectivos , Suspensão de Tratamento , Tomada de Decisões , Assistência Terminal/métodos , MorteRESUMO
INTRODUCTION: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. PATIENTS AND METHODS: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. RESULTS: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. CONCLUSIONS: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.
Assuntos
Cuidados Paliativos , Pediatria , Adolescente , Criança , Morte , Hospitais , Humanos , Estudos RetrospectivosRESUMO
Introducción:Cada año fallecen en España alrededor de 2000 niños y adolescentes; sin embargo, conocemos poco las particularidades que envuelven a la muerte en pediatría. El objetivo de este estudio es documentar las características de los pacientes que fallecen a cargo de los equipos de cuidados paliativos pediátricos en España. Pacientes y métodos:Estudio retrospectivo, descriptivo y multicéntrico. Participaron 14 equipos de todo el territorio nacional.Resultados:Se obtuvieron datos de 164 pacientes. En la mayoría la enfermedad de base eran procesos oncológicos, neurológicos y neuromusculares. La mediana de edad al fallecimiento fue de 6,9 años (RIC: 11,2). La mediana de tiempo de seguimiento por el equipo fue de 0,3 años (RIC: 0,8 años). Los síntomas más frecuentes en la última semana de vida fueron disnea, dolor, aumento de secreciones y trastornos del sueño. El número de fármacos que se administraban a cada paciente una semana previa al fallecimiento tuvo una mediana de 6 (RIC: 4). El lugar de fallecimiento de 95 de los pacientes (57,9%) fue el hospital y de 67 (40,9%) fue su domicilio.Conclusiones:Los pacientes presentaban un amplio rango de edad y una exposición sustancial a la polifarmacia. El tiempo de seguimiento nos muestra el acceso tardío a los programas de cuidados paliativos, deberíamos hacer un esfuerzo para la introducción temprana de estos cuidados y que no quede relegada al final de vida. En España existe una distribución desigual de recursos, sin que todos los equipos tengan la posibilidad de atención domiciliaria, por lo que el lugar de fallecimiento debemos interpretarlo con cautela. (AU)
Introduction:Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain.Patients and methods:Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated.Results:Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home.Conclusions:There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution. (AU)
Assuntos
Humanos , Criança , Pediatria/tendências , Serviços de Saúde da Criança , Cuidados Paliativos , Doença Catastrófica , Polimedicação , Epidemiologia Descritiva , Estudos Retrospectivos , EspanhaRESUMO
INTRODUCTION: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric palliative care teams in Spain. PATIENTS AND METHODS: Retrospective, descriptive, multicentre study. Fourteen teams from all over the country participated. RESULTS: Data were obtained from 164 patients. In most cases the underlying disease stemmed from oncological, neurological or neuromuscular processes. The median age at death was 6.9 years (RIC 11.2). The median follow-up time by the team was 0.3 years (RIC 0.8 years). The most frequent symptoms in the last week of life were dyspnoea, pain, increased secretions and sleep disorders. The median number of drugs administered to each patient one week prior to death was 6 (RIC 4). The place of death for 95 of the patients (57.9%) was hospital while 67 (40.9%) died at home. CONCLUSIONS: There was a wide age range of patients and they had substantial exposure to polypharmacy. The follow-up time shows that patients have late access to palliative care programmes. An effort should be made to introduce this care earlier rather than relegating it to the end of life. In Spain there is an unequal distribution of resources and not all teams can provide care at home. The place of death should be interpreted with caution.
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Introducción y objetivos: El progreso evidente de los cuidados paliativos es un reflejo de las necesidades de la sociedad actual. Sin embargo, existen dificultades para su desarrollo. La muerte es un tabú social, siendo esta una de las barreras para su implementación. El objetivo del estudio es analizar la percepción de la muerte entre los médicos internos residentes (MIR), promover la reflexión y buscar líneas de acción para superarlas. Método: Mediante un cuestionario anónimo y voluntario online dirigido a MIR, se recogieron datos sobre la percepción y vivencia personal-profesional de la muerte, la formación recibida y los métodos docentes considerados más adecuados. Se propusieron líneas de acción para superar dichas barreras. Resultados: Se registraron 353 respuestas. El 81 % provenían de especialidades médicas, participaron MIR de 38 especialidades. Todos los encuestados percibían la muerte como tabú y sostenían su influencia en el cuidado de los enfermos al final de la vida. Los MIR que habían participado activamente en el cuidado de enfermos en situación de enfermedad avanzada y los que habían recibido mejor formación sobre la muerte se sentían profesional y personalmente más preparados para afrontar estas situaciones (p < 0,01). Un 97,5 % consideró muy necesario recibir formación, incluida en el currículo académico/profesional, y mediante cursos o reuniones abiertas. La normalización de la muerte desde la infancia, el desarrollo de los cuidados paliativos, la reflexión personal y los grupos de apoyo fueron las líneas de acción preferidas. Conclusiones: Según los MIR de la muestra el tabú social de la muerte tiene consecuencias directas en la atención a enfermos al final de la vida. Aquellos con mayor experiencia personal o académica se sentían mejor preparados para atenderlos. Todos consideraron muy necesario mejorar su formación y plantearon diversas líneas de acción para superar los obstáculos en la atención al final de la vida. (AU)
Introduction and objectives: The evident progress of palliative care is a reflection of the needs of todays society. However, there are still difficulties in its development. Death is a social taboo, and this is one of the barriers to implementation. The aim of this study is to analyse the perception of death among Medical Interns (MI), to promote reflection, and to explore lines of action to overcome barriers. Methods: A voluntary, anonymous online questionnaire was sent to MI to collect data on the personal-professional perception and experience of death, the training received, and the teaching methods considered most appropriate. Different lines of action were proposed to overcome these barriers. Results: We recorded 353 responses from 11 training hospitals: 81 % were from medical specialities, although MI from 38 specialities were involved. They all perceived death as taboo and argued for its influence in the care of terminally ill people. The MI who had actively participated in the care of terminally ill patients, and those who had received better training on death, felt professionally and personally more qualified to deal with terminal situations (p < .01). In all, 97.5 % considered that there was a great need for training, including in the academic/professional curriculum, and through courses or meetings. The normalisation of death from childhood, the development of palliative care, personal reflection and support groups were the preferred lines of action to improve the current scenario. Conclusions: According to the MI in the sample the social taboo of death has direct consequences on the care of the terminally ill. MI with greater personal or academic experience felt more prepared to care for terminally ill patients. All of them considered it very necessary to improve training in this area and proposed different lines of action to overcome the barriers to end-of-life care. (AU)
