How do hospitalised children die? The context of death and end-of-life decision-making.

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 Life-sustaining treatment was withheld or withdrawn in 53.6%, with no differences between the time courses.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.

La muerte en la sociedad actual: percepción de los médicos internos residentes / Death in modern society: perception of resident doctors

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 today’s 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)

Natural resistance to Meningococcal Disease related to CFH loci: Meta-analysis of genome-wide association studies.

Meningococcal disease (MD) remains an important infectious cause of life threatening infection in both industrialized and resource poor countries. Genetic factors influence both occurrence and severity of presentation, but the genes responsible are largely unknown. We performed a genome-wide association study (GWAS) examining 5,440,063 SNPs in 422 Spanish MD patients and 910 controls. We then performed a meta-analysis of the Spanish GWAS with GWAS data from the United Kingdom (combined cohorts: 897 cases and 5,613 controls; 4,898,259 SNPs). The meta-analysis identified strong evidence of association (P-value ≤ 5 × 10-8) in 20 variants located at the CFH gene. SNP rs193053835 showed the most significant protective effect (Odds Ratio (OR) = 0.62, 95% confidence interval (C.I.) = 0.52-0.73; P-value = 9.62 × 10-9). Five other variants had been previously reported to be associated with susceptibility to MD, including the missense SNP rs1065489 (OR = 0.64, 95% C.I.) = 0.55-0.76, P-value = 3.25 × 10-8). Theoretical predictions point to a functional effect of rs1065489, which may be directly responsible for protection against MD. Our study confirms the association of CFH with susceptibility to MD and strengthens the importance of this link in understanding pathogenesis of the disease.

Cardiac index monitoring by femoral arterial thermodilution after cardiac surgery in children.

PURPOSE: The aim of this study is to determine whether the maintenance of cardiac index (CI) measured by femoral arterial thermodilution during the postoperative period after heart surgery in children is related to short-term outcome. MATERIALS AND METHODS: A prospective observational study in a pediatric intensive care unit at a referral hospital for congenital heart disease was conducted. Thirty-five children after open heart surgery were monitored in 5 planned times with PiCCO (Pulsion Medical System AG, Munich, Germany) during the first 24 hours after admission. Normal CI was defined as 3 L min(-1) m(-2) or greater. RESULTS: Eighteen patients hold CI at every measurement point. In this group, the median stay in the pediatric intensive care unit was 3 days (range, 2-7 days) compared with the median of 6 days (range, 2-34 days) obtained by the rest (P<.005). Duration of mechanical ventilation was 12 hours (range, 3-48 hours), and overall stay in the hospital was 6 days (range, 2-15 days) compared with 25 hours (range 6-432 hours) and 16 days (range, 4-50 days) obtained by the second group (P<.05). No complications were attributed to the use of the device. CONCLUSIONS: Monitoring by femoral arterial thermodilution has been feasible in our experience. Maintenance of a CI of 3 L min(-1) m(-2) or greater is related to a better patient's early outcome.