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)

Aggressiveness of end-of-life cancer care: what happens in clinical practice?

PURPOSE: End-of-life cancer care varies widely, and very few centers evaluate it systematically. Our objective was to assess indicators of the aggressiveness of end-of-life cancer care in clinical practice. METHODS: An observational, longitudinal, and retrospective cohort study was conducted at a tertiary hospital. Eligible patients were at least 18 years old, had a solid tumor, were followed up by the Oncology Department, and had died because of cancer or associated complications during 2017. We used the criteria of Earle et al. (J Clin Oncol 21(6):1133-1138, 2003) to assess the aggressiveness of care. Multivariate logistic regression analyses were performed to characterize factors associated with aggressiveness of therapy. RESULTS: The study population comprised 684 patients. Eighty-eight patients (12.9%) received anti-cancer treatment during the last 14 days of their lives, and 62 patients (9.1%) started a new treatment line in the last 30 days. During the last month of life, 102 patients (14.9%) visited the ER, 80 patients (11.7%) were hospitalized more than once, and 26 (3.8%) were admitted to the ICU. A total of 326 patients (47.7%) died in the acute care unit. A total of 417 patients (61.0%) were followed by the Palliative Care Unit, and in 54 cases (13.0%), this care started during the last 3 days of life. CONCLUSIONS: The use of anti-cancer therapies and health care services in our clinical practice, except for the ICU, did not meet the Earle criteria for high-quality care. Concerning hospice care, more than half of the patients received hospice services before death, although in some cases, this care started close to the time of death.