ABSTRACT
The use of implantable cardioverter-defibrillators (ICDs) has been on the rise. Patients using ICDs inevitably transit towards the end of life at some point, including some who develop terminal illnesses. In this context, it is relevant to discuss and evaluate the deactivation of these devices with the aim of addressing patients' comfort and avoiding shocks during the end-of-life phase. There are multiple communicational and operational barriers when considering ICDs deactivation. Firstly, many patients have not discussed this issue with their physicians despite international guidelines recommending such discussions before device installation. Secondly, there is a significant lack of knowledge among patients, family members, and even doctors about the benefits of ICDs, as well as the deactivation process and ethics considerations, which leads them to believe that immediate death will occur, considering it as euthanasia or assisted suicide. Finally, the management of hospice patients or end-of-life ICDs users is poorly standardized, with low rates of deactivation, resulting in shocks in the last minutes of life, which can cause marked distress to patients and families. It is necessary to address these barriers and discuss these issues with patients to inform and educate them about the functioning of their devices, with the ultimate goal of enabling informed and shared decision-making for patient well-being.
Subject(s)
Defibrillators, Implantable , Terminal Care , Humans , Defibrillators, Implantable/ethics , Terminal Care/ethics , Terminal Care/psychology , Withholding Treatment/ethics , Physician-Patient Relations , CommunicationABSTRACT
The Shiga toxin associated (Stx) hemolytic uremic syndrome (HUS) is an important cause of acute renal failure (ARF) and the most common cause of thrombotic microangiopathy (TMA) in pediatrics. Primary atypical HUS (aHUS) is a rare disease due to a genetic defect in the alternative complement pathway. Both diseases may share clinical and laboratory elements, making differential diagnosis difficult, such as the presence of diarrhea in aHUS or complement alterations in HUS-Stx. The treatment and prognosis of both diseases is completely different. We report a 15-year-old male with severe HUS. After a self-limited diarrheal syndrome, he had a severe TMA and ARF, requiring renal replacement therapy. An extensive etiological study was carried out, ruling out the main causes of TMA. Alterations in complement factors were observed. Finally, the diagnosis of HUS-Stx was established. The patient evolved favorably with recovery of renal function.
Subject(s)
Acute Kidney Injury , Atypical Hemolytic Uremic Syndrome , Immune System Diseases , Acute Kidney Injury/etiology , Adolescent , Atypical Hemolytic Uremic Syndrome/complications , Atypical Hemolytic Uremic Syndrome/diagnosis , Child , Diarrhea/complications , Humans , Male , Prognosis , Shiga ToxinABSTRACT
SUMMARY STATEMENT: The sudden rise of critically ill patients secondary to the SARS-CoV-2 pandemic has triggered a surge in healthcare response. This project's goal was to provide essential cognitive and technical skills to healthcare professionals returning to the workforce or reassigned to critical care clinical duties during the COVID-19 pandemic. The plan included the implementation of 4 distance-based simulation training programs, with asynchronous personalized feedback. The courses allowed the acquisition of skills for the complete critical care patient management chain: use of personal protection equipment, use of a high-flow nasal cannula, endotracheal intubation, and prone positioning. Participants logged into the platform, reviewed material, practiced while recording the session, and uploaded the video through the training platform. The expert tutor remotely delivered asynchronous feedback. Participants trained remotely until achieving course approval. Remote-based simulation seems a feasible and attractive alternative to provide adequate educational solutions, especially for remote and rural areas.
Subject(s)
COVID-19 , Simulation Training , Delivery of Health Care , Humans , Pandemics , SARS-CoV-2ABSTRACT
El uso de desfibriladores automáticos implantables (DAI) ha ido en aumento. Los pacientes usuarios de DAI inevitablemente transitan hacia el fin de la vida en algún momento, incluyendo la concurrencia de patologías terminales. En dicho contexto se hace relevante discutir y evaluar la desactivación de estos dispositivos en búsqueda del confort del paciente y evitar descargas en la fase de fin de vida. Hay múltiples barreras comunicacionales y operacionales a la hora de considerar la desactivación del DAI. En primer lugar, un gran porcentaje de pacientes no lo ha discutido con su tratante pese a las recomendaciones de guías internacionales de realizarlo previo a la instalación del dispositivo. En segundo lugar, existe un importante desconocimiento de pacientes, familiares e incluso médicos sobre los beneficios de DAI así como del proceso de desactivación y la discusión ética que incluso los lleva a pensar que ocurrirá una muerte inmediata, considerándolo como eutanasia o suicidio asistido. Finalmente, el manejo de pacientes en hospicios o el manejo de fin de vida en usuarios de DAI está escasamente protocolizado, con bajos porcentajes de desactivación, lo que se traduce en descargas en los últimos minutos de vida que producen angustia marcada a pacientes y familiares. Es necesario abordar estas barreras y discutir dichas temáticas con los pacientes para informarlos y educarlos en el funcionamiento de su dispositivo, con el objetivo final de permitir la toma de una decisión informada y compartida, en línea con el bienestar de los pacientes.
The use of implantable cardioverter-defibrillators (ICDs) has been on the rise. Patients using ICDs inevitably transit towards the end of life at some point, including some who develop terminal illnesses. In this context, it is relevant to discuss and evaluate the deactivation of these devices with the aim of addressing patients' comfort and avoiding shocks during the end-of-life phase. There are multiple communicational and operational barriers when considering ICDs deactivation. Firstly, many patients have not discussed this issue with their physicians despite international guidelines recommending such discussions before device installation. Secondly, there is a significant lack of knowledge among patients, family members, and even doctors about the benefits of ICDs, as well as the deactivation process and ethics considerations, which leads them to believe that immediate death will occur, considering it as euthanasia or assisted suicide. Finally, the management of hospice patients or end-of-life ICDs users is poorly standardized, with low rates of deactivation, resulting in shocks in the last minutes of life, which can cause marked distress to patients and families. It is necessary to address these barriers and discuss these issues with patients to inform and educate them about the functioning of their devices, with the ultimate goal of enabling informed and shared decision-making for patient well-being.
ABSTRACT
The Shiga toxin associated (Stx) hemolytic uremic syndrome (HUS) is an important cause of acute renal failure (ARF) and the most common cause of thrombotic microangiopathy (TMA) in pediatrics. Primary atypical HUS (aHUS) is a rare disease due to a genetic defect in the alternative complement pathway. Both diseases may share clinical and laboratory elements, making differential diagnosis difficult, such as the presence of diarrhea in aHUS or complement alterations in HUS-Stx. The treatment and prognosis of both diseases is completely different. We report a 15-year-old male with severe HUS. After a self-limited diarrheal syndrome, he had a severe TMA and ARF, requiring renal replacement therapy. An extensive etiological study was carried out, ruling out the main causes of TMA. Alterations in complement factors were observed. Finally, the diagnosis of HUS-Stx was established. The patient evolved favorably with recovery of renal function.