Advance Care Planning in Spain.

In the last decade in Spain, an important push has been given to the development of health policies that define the framework of action in the care of people with advanced chronic diseases. Respect for the autonomy of the patient, shared decision-making processes and advance care planning (ACP) are recognized into health plans as a key aspect in chronic care, frailty, and palliative care. A few but significant number of institutions, local governments, and healthcare professionals from different regions of Spain have started a rationale and roadmap for a new twist in Spain's theoretical, ethical and policy development, promoting ACP implementation into public health care systems. In 2020, a working group founded in 2017, evolved into the "Spanish Association of Shared Care Planning" (AEPCA). The Shared Care Planning (SCP) concept grows up after the two international consensus Delphi studies in 2017 and pretends to shift from the framework of ACP programs to a person-centred care approach. In the last years, several experiences show how professionals are more sensible and interested on the ACP process, but it cannot be said, for now, that it has taken effect in the global Spanish health system. Even both ACP and SCP are being used simultaneously in Spain, each day more people and autonomous communities embrace renewed concept and foundations of SCP, supporting the work of AEPCA on spreading the value of this process into the care of people who are coping with chronic diseases, vulnerability, and frailty.

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.

Dolor irruptivo refractario a ketamina y metadona resuelto con abordaje multimodal / The management of breakthrough pain refractory to methadone and ketamine using a multimodal approach

Presentamos el caso de una paciente de 28 años de edad que padece un tumor óseosacro de células gigantes con invasión pélvica desde hace dos años manteniendo un excelente estado funcional. Durante este tiempo ha sido tratada por su Equipo de Soporte de Atención Domiciliaria, con dos ingresos en una Unidad de Cuidados Paliativos de Media Estancia. La enferma accedió a nuestra Unidad de Cuidados Paliativos agudos para manejo de múltiplescrisis de dolor irruptivo en miembro inferior derecho de intensidad 10/10, asociadas a toxicidad grave inducida por ketamina. Dichas crisis no se controlaban con una combinación de metadona,venlafaxina, gabapentina, paracetamol, antiinflamatorios, esteroides, diazepam, baclofeno y ketamina. Tras una adecuada identificación clínico-radiológica de la etiología de las crisis de dolor, se obtuvo un adecuado control del mismo mediante un abordaje terapéutico multimodal. Dicho abordaje incluyó la retirada de la ketamina, rotación opioide a morfina, optimización de las dosis de baclofeno, radioterapia paliativa y bisfosfonatos (AU)

We report the case of a 28 year-old patient with a giant cell sacral bone tumour with pelvic invasion for two years, who maintained an excellent functional status. During this time she was cared for by the Home Care Support Team, with two admissions to a chronic Palliative Care Unit. The patient was admitted to our acute Palliative Care Unit for the management of severe breakthrough pain in the right lower limb with 10/10 intensity, associated to severe oxicity induced by ketamine. The multiple pain crises were not adequately controlled with acombination of methadone, venlafaxine, gabapentin, acetaminophen, antiinflammatory drugs, steroids, diazepam, baclofen and ketamine. After an adequate clinical --- radiological identification of the origins of the pain crises, the pain was successfully controlled with a multimodal therapeutic approach. This approach included discontinuation of ketamine, opioid rotation tomorphine, titration of baclofen doses, palliative radiotherapy and biphosphonates (AU)