Seguimiento de pacientes con esclerosis lateral amiotrófica por un equipo de cuidados paliativos domiciliario / Follow-up of patients with amyotrophic lateral sclerosis by a home palliative care team

Antecedentes y objetivo: Pocos estudios describen el final de la vida de los pacientes con esclerosis lateral amiotrófica (ELA). Nuestro objetivo principal fue describir la trayectoria final de vidade pacientes con ELA seguidos por un equipo de soporte cuidados paliativos domiciliario (equipode soporte de atención paliativa domiciliaria [ESAPD]). El objetivo secundario fue examinar losfactores asociados con el lugar de muerte y supervivencia.Ámbito y diseño: Estudio observacional retrospectivo en una cohorte de pacientes diagnosticadoscon ELA y seguido por un ESAPD. Se analizaron variables sociodemográficas, la supervivenciadesde el inicio de la ventilación, supervivencia desde el inicio de la gastrostomía, consumode recursos sanitarios, uso de opioides, planificación anticipada de decisiones (PAD), lugar demuerte y causa de muerte.Resultados: Se incluyeron 60 pacientes. Los principales síntomas fueron disnea y disfagia. LaPAD fue trabajada en el 83 % de los pacientes. Cincuenta y dos (83 %) pacientes murieron endomicilio o en una unidad de cuidados paliativos. Se requirieron opioides durante las últimas24 h en el 47 % de los pacientes. La causa de muerte fue por insuficiencia respiratoria, infección respiratoria, muerte durante el sueño y rechazo del tratamiento para el 47, 16, 15 y 15 %respectivamente. El 25 % requirieron sedación paliativa. La supervivencia media desde el iniciode la alimentación enteral, la ventilación mecánica no invasiva y la ventilación invasiva fue de 7, 13 y 12 meses, respectivamente. El número promedio de visitas del ESADP fue de 14 (DE:12). Haber recibido información y no haber sido ingresado en el hospital durante el periodode estudio se asoció con un aumento significativo de la probabilidad de morir en el domicilio.Conclusiones: La causa de muerte más frecuente fue la insuficiencia respiratoria, que en la mayoría de los casos requirió tratamiento con opioides. Uno de cada 4 pacientes requirió sedación paliativa. (AU)

Background and objectives: Few studies have reported end of life for patients with amyotrophiclateral sclerosis (ALS). Our main objective was to describe the end-of-life trajectory of patientsmonitored by a palliative home care team (PHTC). The secondary objective was to examinefactors associated with place of death and survival.Setting and design: A retrospective, observational study in a cohort of patients diagnosed withALS followed by a PHCT. Sociodemographic variables, survival from start of ventilation andgastrostomy, use of health resources, opioid use, care planning, place of death, and cause ofdeath were analyzed.Results: Sixty patients were included. Main symptoms included dyspnea and dysphagia. Advancecare planning was possible for 83 %. Fifty-two (83 %) died at home or in a palliative care unit.The cause of death was respiratory failure, respiratory infection, death during sleep, and refusalof treatment for 47 %, 16 %, 15 % and 15 %, respectively. Opioids were required in 47 %, and 25 %needed palliative sedation. Average survival from start of enteral feeding, noninvasive mechanical ventilation, and invasive ventilation was 7, 13 and 12 months, respectively. Average of visitswas 14 (SD 12). Having received informal support and not having been admitted to hospitalduring the study period were associated with a significantly increased rate of dying at home.Conclusions: The most frequent cause of death was respiratory failure, most cases requiredopioids, and one out of every four needed palliative sedation. Most died at home. (AU)

Breaking Barriers: Prospective Study of a Cohort of Advanced Chronic Obstructive Pulmonary Disease Patients To Describe Their Survival and End-of-Life Palliative Care Requirements.

BACKGROUND AND AIM: Consensus has been reached on the need to integrate palliative care in the follow-up examinations of chronic obstructive pulmonary disease (COPD) patients. We analyzed the survival from the initiation of follow-up by a palliative home care team (PHCT) and described the needs and end-of-life process. SETTING AND DESIGN: This study was a prospective observational cohort study of advanced COPD patients referred to a PHCT. Sociodemographic variables, survival from the start date of follow-up using the Kaplan-Meier model, health resource consumption, perceived quality of life, main symptomatology, opioid use, and advanced care planning (ACP) were analyzed. RESULTS: Sixty patients were included. The median survival was 8.3 months. Forty-two patients died at the end of the study (85% at home or in palliative care units). The most frequent cause of death was respiratory failure in 39 patients (93%), with 29 of these patients requiring sedation (69%). Dyspnea at rest, with an average of 5 (standard deviation [SD] 2) points, was the main symptom. Fifty-five patients (91%) required opioids for symptom control. The median score in the St. George's Respiratory Questionnaire was 72 (SD 13). The mean number of visits by the home team was 7 (SD 6.5). The mean number of admissions during the monitoring period was 1.5 (SD 0.15). CONCLUSIONS: The characteristics of the cohort appear suitable for a PHCT. The follow-up care provided by our multidisciplinary unit decreased the number of hospitalizations, favored the development of ACP, and enabled death at home or in palliative care units.

Atención al final de la vida en los pacientes con fibrosis pulmonar idiopática / End of life care in pulmonary fibrosis

OBJETIVOS: Describir el final de vida de los pacientes con fibrosis pulmonar idiopática (FPI) desde la experiencia del seguimiento de un Equipo de Soporte de Atención Paliativa Domiciliario. (ESAPD). METODOLOGÍA: Estudio descriptivo retrospectivo de pacientes con FPI atendidos por un ESAPD en los años 2011, 2012 y 2013. Analizamos: variables sociodemográficas, nivel de información, situación funcional, tratamientos recibidos, control de síntomas, situación de últimos días, lugar de fallecimiento y carga asistencial. Análisis de datos con SPSS®. RESULTADOS: Se atendieron 6 pacientes con FPI. Edad media de 74 años, cuatro hombres. Al inicio: Barthel de 50 (DS 30) y palliative performance score de 50 (DS 4), con un índice de comorbilidad de Charlson de 1,5 (DS 1,2). Los síntomas más importantes durante el seguimiento fueron la disnea de mínimos esfuerzos (69% al inicio, 100% en la última semana) y los síntomas de hipercapnia (16% al inicio y 50% en la última semana). Cinco pacientes tenían información diagnóstica y pronóstica. Consumían una media de 10 fármacos. Un 66% fármacos inhalados y un 100% esteroides, opioides y OCD con sistema de alto flujo. Cuatro pacientes precisaron vía subcutánea y administración de morfina (dosis media 25 mg/día). El lugar de fallecimiento fue el domicilio (50%) y Unidades de Cuidados Paliativos (50%). La mediana de días de seguimiento por ESAPD fueron 18 (4-210), con una media de 5 (DS 4) visitas por ESAPD. La mediana de supervivencia desde el diagnóstico fue de 11,5 meses (3-60). CONCLUSIONES: Los pacientes con FPI presentan una importante disnea, muy limitante que progresa hasta hacerse de reposo, lo que justificaría un seguimiento domiciliario estrecho por un ESAPD

AIM: To describe the clinical course of patients with advanced idiopathic pulmonary fibrosis (IPF) followed up by a Palliative Home Care Supportive Team (PHCST). METHODS: Observational, retrospective study of patients with IPF who were followed up by a PHCST during 2011,2012 and 2013. We analyzed: demographic characteristics, information level, performance status,, treatments, symptom control, last day's situation, place of death, and care burden. Data were analyzed using SPSS®. RESULTS: A total of 6 patients were analyzed, with a mean age of 74, 4 males. At baseline: Barthel score 50 (SD 30), palliative performance score (PPS) 50 (SD 4), and Charlson Comorbidity Index 1.5 (SD 1.2). The main problems reported by patients were dyspnea with minimal activity (69% at baseline, 100% in the last week) and clinical signs of hypercapnia (16% at baseline, 50% in the last week). Five patients were informed about diagnosis and the prognosis. Patients were taking an average of 10 drugs, with 66% used inhalation drugs, and 100% used corticosteroids, opioids and high flow oxygen delivery. Four patients used subcutaneous route and morphine administration (mean dose of 25 mg/day). The place of death was at home (50%), and in a palliative care unit (50%). The median PHCST follow-up time was 18 days (4-210) with a mean of 5 (SD 4) PHCST visits during this period. The median survival time between diagnosis and death was 11.5 months (3-60). CONCLUSIONS: Patients with IPF exhibit a very important dyspnea, very limiting that progresses even at rest, which would justify a narrow home monitoring by PHCST

HOLD study (Home care Obstructive Lung Disease): natural history of patients with advanced COPD.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is the fourth cause of death in western countries. Its final stage has clearly been forgotten by medical research in recent years. There exists consensus regarding the need to integrate palliative care in assisting these patients, but the difficulty in establishing a prognosis for the disease, establishing limits for life support measures, the lack of information about the disease's natural course and ignorance as to the most effective health-care structure for these patients' palliative treatment may be responsible for their late inclusion or non-inclusion in specific programmes. The main purpose of this work is to find out the natural background of patients with stage IV COPD and the main prognostic factors that influence these patients' survival. METHODS/DESIGN: Prospective observational study of a home patient cohort with stage IV COPD sent from Neumology consultations and Palliative Care Unit in La Paz Hospital in Madrid and Primary Care Health Centres in the area to the palliative care home support team. The goal is to study socio-demographic variables, prognosis, nutritional status, use of health resources, perceived quality of life, functionality, main symptomatology, use and effectiveness of opioids, adherence to treatment, prognostic information regarding the disease, information given by professionals, advance directives, social backup requirements and overburden level of the main caregiver. DISCUSSION: The HOLD study is a project aimed at finding out the prognostic factors and evolution of the disease COPD in its most advanced stage. The final goal is to improve the health and quality of life, in a personalised, integral way up to end of life and explore and foster communication with patients, as well as their participation and collaboration in decision-taking. The HOLD study can help us better understand what these patients' real palliative and care needs are, in order to more efficiently organise their treatment at end of life.