Consideraciones bioéticas en el manejo de la esclerosis lateral amiotrófica: Una aproximación al quehacer fonoaudiológico

Introducción: La esclerosis lateral amiotrófica (ELA) es la forma más común de enfermedad degenerativa de motoneurona en la edad adulta y es considerada una enfermedad terminal. Por lo mismo, el accionar del fonoaudiólogo debe considerar el respeto a los principios bioéticos básicos para garantizar una asistencia adecuada. Objetivo: Conocer aquellas consideraciones bioéticas relacionadas al manejo y estudio de personas con ELA para luego brindar una aproximación hacia el quehacer fonoaudiológico. Método: Se efectuó una búsqueda bibliográfica en las bases de datos PubMed, Scopus y SciELO. Se filtraron artículos publicados desde 2000 hasta junio de 2023 y fueron seleccionados aquellos que abordaban algún componente bioético en población con ELA. Resultados: Aspectos relacionados al uso del consentimiento informado y a la toma de decisiones compartidas destacaron como elementos esenciales para apoyar la autonomía de las personas. Conclusión: Una correcta comunicación y una toma de decisiones compartida son claves para respetar la autonomía de las personas. A su vez, la estandarización de procedimientos mediante la investigación clínica permitirá aportar al cumplimiento de los principios bioéticos de beneficencia y no maleficencia, indispensables para la práctica profesional.

Introduction: Amyotrophic lateral sclerosis (ALS) is the most common form of degenerative motor neuron disease in adulthood and is considered a terminal disease. For this reason, the actions of the speech therapist must consider respect for basic bioethical principles to guarantee adequate assistance. Objective: To know those bioethical considerations related to the management and study of people with ALS to then provide an approach to speech therapy. Methodology: A bibliographic search was carried out in the PubMed, Scopus, and SciELO databases. Articles published from 2000 to June 2023 were filtered and those that addressed a bioethical component in the population with ALS were selected. Results: Aspects related to the use of informed consent and shared decision-making stood out as essential elements to support people's autonomy. Conclusion: Proper communication and shared decision-making are key to respecting people's autonomy. In turn, the standardization of procedures through clinical research will contribute to compliance with the bioethical principles of beneficence and non-maleficence, essential for professional practice.

Interprofessional interventions and factors that improve end-of-life care in intensive care units: An integratory review.

INTRODUCTION: The changes in health dynamics, caused by the SARS-COVD-2 pandemic and its consequences, generated a greater need to integrate palliative care in the ICU to promote a dignified death. OBJECTIVE: Identify interprofessional interventions and factors that improve the care of patients at the end of life. METHODOLOGY: Integrative review, including experimental, quasi-experimental, observational, analytical, and descriptive studies with correlation of variables, published from 2010 to 2021, identified in COCHRANE, CINAHL, CUIDEN, LILACS, SCIELO, Dialnet, PsychInfo, PubMed, PROQUES, PSYCHOLOGY, JOURNALS, SCIENCEDIRECT, with MeSH/DECS terms: "Critical Care", "IntensiveCare" "Life support care", "Palliative care", "Life Quality", "Right to die". 36,271 were identified, after excluding duplicate title, abstract, year of publication, design, theme, methodological quality, objectives, and content, 31 studies were found. RESULTS: It included 31 articles, 16.7% experimental, 3.3% quasi-experimental, 80% observational, analytical, and descriptive with correlation of variables, 38% published in the United States, 38%, and 19% in Brazil. The pooled sample was 24,779 participants. 32.2% of the studies had level of evidence 1 recommendation (c), and 25.8% level of evidence 2 recommendation (c). This paper synthesises evidence to promote Interprofessional Collaborative Practice in the ICU, improve end-of-life care, and interventions to achieve established therapeutic goals, implement effective care policies, plans, and programmes for critically ill patients and their families; factors that affect palliative care and improve with training and continuing education for health personnel. CONCLUSION: There are interventions to manage physical and emotional symptoms, training strategies and emotional support aimed at health personnel and family members to improve the quality of death and reduce stays in the ICU. The interdisciplinary team requires training on palliative and end-of-life care to improve care.

Fatores preditores associados a ocorrência de lesão por pressão em pacientes em cuidados paliativos oncológicos / Predictive factors associated with the occurrence of pressure injuries in patients undergoing cancer palliative care / Factores predictivos asociados con la aparición de lesiones por presión en pacientes sometidos a cuidados paliativos oncológicos

Objetivo: Avaliar os fatores preditores para ocorrência de lesão por pressão em pacientes oncológicos em cuidados paliativos. Métodos: Estudo epidemiológico observacional, analítico, com delineamento transversal e abordagem quantitativa. A coleta de dados foi realizada com 105 participantes, no período de maio a outubro de 2019, em uma Clínica de Cuidados Paliativos Oncológicos de um Centro de Alta Complexidade em Oncologia. Os foram inseridos no software Biostat 5.0, em que foi realizada primeiramente a análise de regressão logística univariada, e posteriormente foram selecionadas as variáveis para a regressão logística múltipla e assim definiram-se os fatores preditivos para lesão por pressão. Resultados: A prevalência identificada foi de 19,04% para lesão por pressão. A maioria da amostra eram mulheres (60%), com idade menor que 70 anos (70%). Dois terços apresentavam risco muito alto (15%), para lesão por pressão segundo a Escala de Braden, e possuíam como diagnóstico primário câncer de próstata (20%), seguido de colo uterino (15%). Conclusão: A presença de lesão medular e o uso de fralda descartável demonstrou forte correlação com o desenvolvimento de lesão por pressão, sendo estes os fatores preditivos identificados neste estudo. Conhecer o perfil desses pacientes auxilia na elaboração e sistematização das condutas de enfermagem, visando melhor qualidade e segurança no cuidado. (AU)

Objective: To evaluate the predictive factors for the occurrence of pressure injuries in cancer patients undergoing palliative care. Methods: Observational, analytical, cross-sectional epidemiological study with a quantitative approach. Data collection was carried out with 105 participants, from May to October 2019, in an Oncology Palliative Care Clinic of a High Complexity Oncology Center. The data were entered into the Biostat 5.0 software, in which the univariate logistic regression analysis was first performed, and then the variables for the multiple logistic regression were selected, thus defining the predictive factors for pressure injury. Results: The identified prevalence was 19.04% for pressure injuries. Most of the sample were women (60%), aged under 70 years (70%). Two-thirds were at very high risk (15%) for pressure injury according to the Braden Scale, and had prostate cancer as a primary diagnosis (20%), followed by cervix (15%). Conclusion: The presence of spinal cord injury and the use of a disposable diaper showed a strong correlation with the development of pressure injury, which are the predictive factors identified in this study. Knowing the profile of these patients helps in the elaboration and systematization of nursing procedures, aiming at better quality and safety in care. (AU)

Objetivo: Evaluar los factores predictivos de la ocurrencia de lesiones por presión en pacientes oncológicos sometidos a cuidados paliativos. Métodos: Estudio epidemiológico observacional, analítico, transversal con enfoque cuantitativo. La recolección de datos se realizó con 105 participantes, de mayo a octubre de 2019, en una Clínica de Cuidados Paliativos Oncológicos de un Centro Oncológico de Alta Complejidad. Los datos se ingresaron en el software Biostat 5.0, en el cual se realizó primero el análisis de regresión logística univariante, y luego se seleccionaron las variables para la regresión logística múltiple, definiendo así los factores predictivos de lesión por presión. Resultados: La prevalencia identificada fue del 19,04% para las lesiones por presión. La mayoría de la muestra fueron mujeres (60%), menores de 70 años (70%). Dos tercios tenían un riesgo muy alto (15%) de lesión por presión según la escala de Braden y tenían cáncer de próstata como diagnóstico primario (20%), seguido del cuello uterino (15%). Conclusión: La presencia de lesión medular y el uso de pañal desechable mostró una fuerte correlación con el desarrollo de lesión por presión, que son los factores predictivos identificados en este estudio. Conocer el perfil de estos pacientes ayuda en la elaboración y sistematización de los procedimientos de enfermería, buscando una mejor calidad y seguridad en la atención. (AU)

Cuidados paliativos en la atención primaria de salud

En la actualidad, la oferta de cuidados paliativos especializados ha sido superada por la demanda, por lo cual la atención a pacientes con enfermedades en estado terminal o en fase final de la vida suele estar a cargo del médico del nivel primario de asistencia. En ese sentido, los cuidados paliativos primarios incluyen el diagnóstico, el tratamiento paliativo, la planificación anticipada, la gestión y coordinación de intervenciones multidisciplinarias y la transferencia a cuidados especializados cuando sea necesario y haya disponibilidad para ello. Al respecto, en este artículo se exponen brevemente algunos elementos sobre el tema y se propone, además, un algoritmo práctico y fácil de aplicar en la atención primaria, que permitirá identificar a la población aquejada por dolencias en esas etapas, con diferenciación en cuanto a afecciones neoplásicas o no neoplásicas.

Nowadays, the offer of specialized palliative care has been overcome by the demand, reason why care to patients with terminal illness or in end-of-life period is usually in charge of the doctor from primary care level. In that sense, primary palliative care includes the diagnosis, palliative treatment, early planning, administration and coordination of multidisciplinary interventions and referring to specialized care when it is necessary and the service is available. In this respect, some elements on the topic are shortly exposed in this work and, also, a practical and easy implementation algorithm in primary care is proposed that will allow identifying population suffering from pain in those stages, with differentiation as for neoplastic or non neoplastic affections.

Análise das informações sobre cuidados paliativos divulgadas na televisão / Analysis of palliative care information broadcasted on television / Análisis de la información sobre cuidados paliativos emitida en televisión

Este estudo de abordagem qualitativa teve como objetivo analisar, a partir do referencial teórico da Análise Institucional, as informações sobre cuidados paliativos veiculadas nos programas da Rede Globo de televisão. A partir da busca no site Globoplay, foram identificados trinta vídeos relacionados ao assunto entre os anos de 2013 e 2020. Entre outros aspectos, foi observado o predomínio de informações divulgadas no mês de outubro, em programas locais da região sudoeste e presença dos profissionais de saúde como a principal fonte de consulta. A televisão se mostrou um importante dispositivo de divulgação de informações sobre cuidados paliativos com os mais variados sentidos, a saber: espiritualidade, alívio da dor e protagonismo dos sujeitos e seus familiares na busca por um processo de morrer com qualidade. Entretanto, nenhum vídeo citou o Sistema Único de Saúde (SUS), o que demonstrou sua invisibilidade nesse meio. Recomenda-se que os meios de comunicação acelerem a divulgação do assunto e que enfatizem o SUS nos conteúdos divulgados.

This qualitative study analyzes the information on palliative care broadcasted by Rede Globo de Televisão's programs based on the theoretical framework of Institutional Analysis. A search on the "Globoplay" website retrieved 30 videos related to the subject between 2013 and 2020. Among other aspects, information was mainly broadcasted in the month of October and in local southwestern programs, having health professionals presented as their main source of information. Television proved to be an important device for disseminating information on palliative care aspects such as spirituality, pain relief and the role of patients and their families in the search for a quality dying process. However, no video mentioned the Unified Health System (SUS), showing its media invisibility. Media conglomerates should increase the dissemination of palliative care information, emphasizing the role played by the SUS.

Este estudio cualitativo tuvo por objetivo analizar, a partir del referencial teórico del Análisis Institucional, las informaciones transmitidas sobre cuidados paliativos en los programas de la Red Globo de Televisión. A partir de la búsqueda en el sitio web Globoplay se identificaron treinta videos relacionados con el tema entre los años 2013 y 2020. Se observó, entre otros aspectos, el predominio de informaciones difundidas en el mes de octubre y en programas locales de la región Suroeste, y los profesionales de la salud se presentaron como la principal fuente de información. La televisión demostró ser un importante dispositivo de difusión de información sobre los cuidados paliativos con los más variados sentidos, como la espiritualidad, el alivio del dolor y el papel de las personas y sus familias en la búsqueda de una muerte digna. Sin embargo, no se mencionó al Sistema Único de Salud (SUS) en ningún video, lo que lo invisibilizó en los medios. Se recomienda que los medios de comunicación avancen en la difusión sobre el tema y que se haga énfasis en el SUS en los contenidos difundidos.

Validated medication deprescribing instruments for patients with palliative care needs: a systematic review / Instrumentos validados de desprescripción de medicamentos para los pacientes que reciben cuidados paliativos: una revisión sistemática

Objectives: Patients with life-limiting illnesses are prone to unnecessary polypharmacy. Deprescribing tools may contribute to minimizing negative outcomes. Thus, the aims of the study were to identify validated instruments for deprescribing inappropriate medications for patients with palliative care needs and to assess the impact on clinical, humanistic, and economic outcomes. Methods: A systematic review was conducted in LILACS, PUBMED, EMBASE, COCHRANE, and WEB OF SCIENCE databases (until May 2021). A manual search was performed in the references of enrolled articles. The screening, eligibility, extraction, and bias risk assessment were carried out by 2 independent researchers. Experimental and observational studies were eligible for inclusion. Results: Out of the 5791 studies retrieved, after excluding duplicates (n = 1050), conducting title/abstract screening (n = 4741), and full reading (n = 41), only 1 study met the inclusion criteria. In this included study, a randomized controlled trial was conducted, which showed a high level of bias risk overall. Adults 75 years or older (n = 130) with limited life expectancy and polypharmacy were allocated to 2 groups [intervention arm (deprescribing); and control arm (usual care)]. Deprescribing was performed with the aid of the STOPPFrail tool. The mean number of inappropriate medications and monthly medication costs were significantly lower in the intervention arm. No statistically significant differences were found in terms of unscheduled hospital presentations, falls, fractures, mortality, and quality of life. Conclusions: Despite the availability of several instruments to support deprescribing in patients with palliative care needs, only 1 of them has undergone validation and robust assessment for effectiveness in clinical practice. The STOPPFrail tool appears to reduce the number of inappropriate medications for older people with limited life expectancy (and probably palliative care needs)...(AU)

Objetivo: Los pacientes con enfermedades terminales son propensos a la polifarmacia innecesaria. Las herramientas de desprescripción pueden contribuir a minimizar los resultados negativos. Por lo tanto, los objetivos del estudio fueron identificar instrumentos validados para la desprescripción de medicamentos inapropiados en pacientes con necesidades de cuidados paliativos y evaluar el impacto en los resultados clínicos, humanísticos y económicos. Métodos: Se realizó una revisión sistemática en las bases de datos LILACS, PUBMED, EMBASE, COCHRANE y WEB OF SCIENCE (hasta mayo de 2021). Se realizó una búsqueda manual en las referencias de los artículos incluidos. La selección, elegibilidad, extracción y evaluación del riesgo de sesgo se llevaron a cabo por dos investigadores independientes. Se aceptó la inclusión de estudios observacionales y experimentales. Resultados: De los 5791 estudios recuperados, después de excluir duplicados (n = 1050), realizar la selección de títulos/resúmenes (n = 4741) y la lectura completa (n = 41), solo un estudio cumplió con los criterios de inclusión. En este estudio incluido, se realizó un ensayo controlado aleatorizado, que mostró un alto nivel de riesgo de sesgo en general. A los adultos de 75 años o más (n = 130) con esperanza de vida limitada y polifarmacia se les asignaron dos grupos [grupo de intervención (desprescripción) y grupo de control (atención habitual)]. Se realizó la desprescripción con la ayuda de la herramienta STOPPFrail. El número promedio de medicamentos inapropiados y los costos mensuales de los medicamentos fueron significativamente más bajos en el grupo de intervención. No se encontraron diferencias estadísticamente significativas en términos de presentaciones hospitalarias no programadas, caídas, fracturas, mortalidad y calidad de vida. Conclusiones: A pesar de la disponibilidad de varias herramientas para apoyar la deprescripción en pacientes con necesidades de cuidados paliativos...(AU)

Instrumentos validados de desprescripción de medicamentos para los pacientes que reciben cuidados paliativos: una revisión sistemática / Validated medication deprescribing instruments for patients with palliative care needs: a systematic review

Objectives: Patients with life-limiting illnesses are prone to unnecessary polypharmacy. Deprescribing tools may contribute to minimizing negative outcomes. Thus, the aims of the study were to identify validated instruments for deprescribing inappropriate medications for patients with palliative care needs and to assess the impact on clinical, humanistic, and economic outcomes. Methods: A systematic review was conducted in LILACS, PUBMED, EMBASE, COCHRANE, and WEB OF SCIENCE databases (until May 2021). A manual search was performed in the references of enrolled articles. The screening, eligibility, extraction, and bias risk assessment were carried out by 2 independent researchers. Experimental and observational studies were eligible for inclusion. Results: Out of the 5791 studies retrieved, after excluding duplicates (n = 1050), conducting title/abstract screening (n = 4741), and full reading (n = 41), only 1 study met the inclusion criteria. In this included study, a randomized controlled trial was conducted, which showed a high level of bias risk overall. Adults 75 years or older (n = 130) with limited life expectancy and polypharmacy were allocated to 2 groups [intervention arm (deprescribing); and control arm (usual care)]. Deprescribing was performed with the aid of the STOPPFrail tool. The mean number of inappropriate medications and monthly medication costs were significantly lower in the intervention arm. No statistically significant differences were found in terms of unscheduled hospital presentations, falls, fractures, mortality, and quality of life. Conclusions: Despite the availability of several instruments to support deprescribing in patients with palliative care needs, only 1 of them has undergone validation and robust assessment for effectiveness in clinical practice. The STOPPFrail tool appears to reduce the number of inappropriate medications for older people with limited life expectancy (and probably palliative care needs)...(AU)

Objetivo: Los pacientes con enfermedades terminales son propensos a la polifarmacia innecesaria. Las herramientas de desprescripción pueden contribuir a minimizar los resultados negativos. Por lo tanto, los objetivos del estudio fueron identificar instrumentos validados para la desprescripción de medicamentos inapropiados en pacientes con necesidades de cuidados paliativos y evaluar el impacto en los resultados clínicos, humanísticos y económicos. Métodos: Se realizó una revisión sistemática en las bases de datos LILACS, PUBMED, EMBASE, COCHRANE y WEB OF SCIENCE (hasta mayo de 2021). Se realizó una búsqueda manual en las referencias de los artículos incluidos. La selección, elegibilidad, extracción y evaluación del riesgo de sesgo se llevaron a cabo por dos investigadores independientes. Se aceptó la inclusión de estudios observacionales y experimentales. Resultados: De los 5791 estudios recuperados, después de excluir duplicados (n = 1050), realizar la selección de títulos/resúmenes (n = 4741) y la lectura completa (n = 41), solo un estudio cumplió con los criterios de inclusión. En este estudio incluido, se realizó un ensayo controlado aleatorizado, que mostró un alto nivel de riesgo de sesgo en general. A los adultos de 75 años o más (n = 130) con esperanza de vida limitada y polifarmacia se les asignaron dos grupos [grupo de intervención (desprescripción) y grupo de control (atención habitual)]. Se realizó la desprescripción con la ayuda de la herramienta STOPPFrail. El número promedio de medicamentos inapropiados y los costos mensuales de los medicamentos fueron significativamente más bajos en el grupo de intervención. No se encontraron diferencias estadísticamente significativas en términos de presentaciones hospitalarias no programadas, caídas, fracturas, mortalidad y calidad de vida. Conclusiones: A pesar de la disponibilidad de varias herramientas para apoyar la deprescripción en pacientes con necesidades de cuidados paliativos...(AU)

A perceção do cuidador informal sobre a hospitalização de familiares com cancro / La percepción del cuidador informal sobre la hospitalización de familiares con cáncer / The informal caregiver´s perception of the hospitalization of familymembers with câncer

Introducción: Los pacientes oncológicos con necesidadde cuidados paliativos continúan internados en serviciosquirúrgicos, donde las enfermeras están preparadas paracuidar al paciente quirúrgico y no para atender sus necesidadespaliativas y las de su familia. Surge la necesidad de cambio,en el cual la familia debe involucrarse en el cuidado.Objetivos: Comprender la percepción de los cuidadoresfamiliares sobre las intervenciones de enfermería en elcuidado de pacientes oncológicos con necesidades de cuidadospaliativos; describir las percepciones de los familiares sobreel apoyo y la disponibilidad de los enfermeros.Metodología: Estudio cualitativo, mediante entrevistasemiestructurada, aplicada a 10 familiares de pacientesoncológicos con necesidad de cuidados paliativos, internadosen un servicio de cirugía, cuyos resultados fueron analizadosmediante análisis de contenido.Resultados: Los familiares entrevistados consideran que ladinámica hospitalaria está centrada en la curación y que nofueron atendidos por las enfermeras, por lo que no hay interésen su proceso vivencial y vivencial. Conclusión: Identificamosfactores facilitadores y obstaculizadores percibidos por losfamiliares cuando su pariente fue hospitalizado. Creemosque los resultados de este estudio indican que es necesarioun cambio en la práctica de enfermería, tanto en la relaciónde ayuda como en el propio cuidado de enfermería, siempreteniendo en cuenta que también se debe cuidar a la familia.(AU)

Introduction: Cancer patients in need of palliative care continueto be admitted to surgical services, where nursesare prepared to take care of the surgical patient andnot to meet their palliative needs and those of theirfamily. Thus, the need for change emerges, in whichthe family should be involved in the care and also beconsidered as a care-receiving unit. Therefore, it ispertinent for nurses to focus their care on the patient-family dyad in a structured and oriented manner forfamily-oriented problem-solving.Objectives: To understand the perception of familycaregivers about nurses' interventions in caring forcancer patients with palliative care needs; describefamily members 'perceptions of nurses' support andavailability.Method: A qualitative study using a semi-structuredinterview with ten relatives of cancer patients in needof palliative care admitted to a surgical service. Theresults were analyzed through content analysis.Results: Participants considered that the hospitaldynamics are centered on healing and that they werenot cared for by nurses, thus not having interest in theirexperiential and existential process. Conclusion: Weidentified facilitating and hindering factors perceivedby the family when a sick member was hospitalized We believe that the results of this study indicate that achange in nursing practice is necessary, both in terms ofhelping relationships and in nursing care itself, alwaysbearing in mind that the family must also be cared for.(AU)

Introdução: Os doentes oncológicos com necessidadede cuidados paliativos continuam a ser internadosem serviços cirúrgicos, onde os enfermeiros estãopreparados para cuidar do doente cirúrgico e nãopara atender as suas necessidades paliativas e as dasua família. Emerge a necessidade de mudança, emque a família deve ser envolvida nos cuidados.Objetivos: Compreender a perceção dos cuidadoresfamiliares sobre as intervenções do enfermeiro nocuidar do doente oncológico com necessidadesde cuidados paliativos; descrever as perceções dosfamiliares relativamente ao apoio e à disponibilidadedos enfermeiros.Metodologia: Estudo qualitativo, com recurso a umaentrevista semiestruturada, aplicada a 10 familiaresde doentes oncológicos com necessidade de cuidadospaliativos, internados num serviço cirúrgico, cujosresultados foram analisados através da análise de conteúdo.Resultados: Os familiares entrevistados consideramque a dinâmica hospitalar é centrada no curar e que nãoforam cuidados pelos enfermeiros, não existindo, assim,interesse pelo seu processo experiencial e vivencial.Conclusão: Identificámos fatores facilitadores edificultadores percecionados pelos familiares aquandodo internamento do seu familiar. Pensamos queos resultados deste estudo indicam ser necessáriauma mudança na prática de enfermagem, quer emtermos de relação de ajuda, quer no próprio cuidarem enfermagem, tendo sempre presente que a famíliatambém deve ser cuidada.(AU)

Cuidando al final de la vida. Un programa de intervención online para familiares de pacientes oncológicos en fase paliativa / Caring the caregivers. An online psychological intervention for family caregivers of oncological palliative patients

Resumen: Objetivo: Analizar la eficacia de un programa de intervención psicológica grupal en formato online diseñado para reducir la sobrecarga y el malestar emocional de los cuidadores informales de pacientes oncológicos en fase final de vida. Método: El programa se desarrolló para cuidadores principales de pacientes oncológicos en situación de enfermedad avanzada, con pronóstico de vida inferior a 6 meses. La intervención consistió en cuatro sesiones semanales. Los instrumentos de evaluación fueron la Escala de Detección de Malestar Emocional del Cuidador Principal y la Escala Zarit Reducida y se aplicaron al inicio y al final del programa. Además, se categorizaron las principales preocupaciones de los cuidadores a través de la Escala de Detección del Malestar del Cuidador Principal. Se utilizaron estadísticos descriptivos y t de Student. Resultados: En el estudio participaron 38 familiares de los cuales el 81,6% eran mujeres. En cuanto el grado de parentesco, el 44,7% eran descendientes del paciente. El malestar emocional se redujo significativamente después de la intervención. La incertidumbre se mantuvo como principal preocupación en ambos momentos de medida. Antes del programa, la segunda preocupación más frecuente fue el sufrimiento por el ser querido enfermo, mientras que después de la intervención fue la preocupación por el sufrimiento de otros miembros de la familia. Conclusiones: La realización de este programa de intervención psicológica grupal online demostró ser efectiva para reducir el malestar emocional en los cuidadores principales de pacientes oncológicos al final de la vida. La incertidumbre fue una preocupación constante a lo largo del programa en los familiares. (AU)

Abstract:Aim: analyze the effectiveness of an online delivered psychological intervention program for oncological palliative caregivers in order to reduce the distress and caregiver burden. Methods: The program was developed for primary caregivers of advanced cancer patients, with a life expectancy of less than 6 months. The intervention consisted of 4 weekly sessions. The assessment instruments were the Caregiver Emotional Distress Detection Scale and the Zarit’s Reduced Scale and were applied at the beginning and end of the program. In addition, the main worries of the caregivers were categorized by the Caregiver Emotional Distress Detection Scale. Descriptive statistics and Student’s t were used. Results: 38 caregivers enrolled in intervention, 81.6% of whom were women. Regarding the degree of kinship, 44.7% were descendants of the patient. The distress was significantly reduced after the intervention. Uncertainty remained the main worry at both moments of measurement. Before the program, the second most frequent worry was the suffering of the patient, while after the intervention it was worries about the suffering of other family members. Conclusions: Carrying out this online group psychological intervention program proved to be effective in reducing emotional distress in the main caregivers of cancer patients at the end of life. Uncertainty was a constant concern throughout the program in the relatives. (AU)

The suffering is expensive: comparison of therapeutic costs between palliative care and dysthanasia patients / El sufrimiento es caro: comparación de costos terapéuticos entre pacientes en cuidados paliativos y distanasia

Objectives: Several studies highlight benefits of palliative care for patients with life-threatening illnesses, especially in terms of pain control and improving life quality. However, there is still research gap, particularly in the Brazilian context, regarding its ability to reduce costs associated with unnecessary invasive tests and procedures often invested in dysthanasia patients, thereby relieving the burden on the healthcare system. Given this scenario, the objective was to determine whether there is a significant difference in healthcare costs between cancer patients receiving palliative care and those in dysthanasia. Method: Documentary research, analyzing 94 medical records of patients who died from cancer in a hospital, divided into two groups: 47 in palliative care and 47 in dysthanasia. The groups had their average costs compared by surveying all tests and procedures recorded in the last 30 days of each patient’s life, with values scored based on the price table of the Unified Health System (Sistema Único de Saúde). Results: Patients receiving curative care in dysthanasia incurred an average cost of 2,316.92 Brazilian Reais (SD = 3,146.60) for tests and procedures in the last 30 days of life. Patients in palliative care had an average cost of 945.40 Brazilian Reais (SD = 2,508.01). There is a statistically significant difference in the invested values between patients in palliative care and those in dysthanasia (U = 620.00; Z = -4.334; p < 0.001). Conclusions: Implementing palliative care can be considered an effective strategy for reducing hospital costs, leading to significant savings within the healthcare system.AU)

Objetivo: Varios estudios destacan los beneficios de los cuidados paliativos para pacientes con enfermedades potencialmente mortales, especialmente en términos de control del dolor y mejora de la calidad de vida. Sin embargo, todavía existe un vacío de investigación, particularmente en el contexto brasileño, con respecto a su capacidad para reducir los costos asociados con pruebas y procedimientos invasivos innecesarios que a menudo se invierten en pacientes con distanasia, aliviando así la carga sobre el sistema de salud. Ante este escenario, el objetivo fue determinar si existe una diferencia significativa en los costos de atención médica entre los pacientes con cáncer que reciben cuidados paliativos y aquellos en distanasia. Método: Investigación documental, analizando 94 historias clínicas de pacientes que fallecieron por cáncer en un hospital, divididas en dos grupos: 47 en cuidados paliativos y 47 en distanasia. Los grupos compararon sus costos promedio encuestando todas las pruebas y procedimientos registrados en los últimos 30 días de vida de cada paciente, con valores puntuados con base en la tabla de precios del Sistema Único de Salud. Resultados: Los pacientes que recibieron atención curativa en distanasia incurrieron en un costo promedio de 2,316,92 reales brasileños (SD=3.146,60) por pruebas y procedimientos en los últimos 30 días de vida. Los pacientes en cuidados paliativos tuvieron un costo promedio de 945,40 reales brasileños (DE=2,508,01). Existe una diferencia estadísticamente significativa en los valores invertidos entre pacientes en cuidados paliativos y aquellos en distanasia (U=620,00; Z=-4,334; p<0,001). Conclusiones: La implementación de cuidados paliativos puede considerarse una estrategia eficaz.(AU)

Dying with end stage kidney disease: factors associated with place of death on a palliative care program / Fim de vida na doença renal terminal: fatores associados ao local de óbito num programa de cuidados paliativos

Abstract Introduction: End of life care of patients with end-stage kidney disease (ESKD) may be particularly challenging and requires the intervention of a specialized palliative care team (PCT). Objective: To characterize the population of ESKD patients referred to a PCT and evaluate the determinants of planned dying at home. Methods: We performed a retrospective observational cohort study of all patients with ESKD referred to our PCT between January 2014 and December 2021 (n = 60) and further characterized those with previously known ESKD regarding place of death (n = 53). Results: The majority of the patients were female and the median age was 84 years. Half of the patients were on conservative treatment, 43% were on chronic hemodialysis, and the remainder underwent hemodialysis on a trial basis and were subsequently suspended. Of those with previously known ESKD, 18% died at home and neither gender, age, cognition, performance status, comorbidities, CKD etiology, or treatment modality were associated with place of death. Anuria was significantly associated with dying at the hospital as was shorter time from dialysis suspension and death. Although not reaching statistical significance, we found a tendency towards a longer duration of palliative care follow-up in those dying at home. Conclusion: Dying at home is possible in a palliative domiciliary program regardless of age, gender, etiology of CKD, major comorbidities, and treatment modality. Anuria and shorter survival from RRT withdrawal may be limiting factors for planned dying at home. A longer follow-up by palliative care may favor dying at home.

Resumo Introdução: Os cuidados de fim de vida em doentescom doença renal terminal (DRT) podem ser desafiantes e necessitar do apoio de uma equipa especializada em cuidados paliativos (ECP). Objetivo: Caracterizar a população de doentes com DRT encaminhada à ECP e avaliar os determinantes para um fim de vida planeado no domicílio. Métodos: Realizámos um estudo de coorte observacional retrospectivo dos doentes com DRT encaminhados à ECP entre janeiro/2014 e dezembro/2021 (n = 60) e caracterizámos aqueles com DRT previamente conhecida relativamente ao local de fim de vida (n = 53). Resultados: A maioria dos pacientes eram mulheres comidade mediana de 84 anos. Metade dos doentes encontrava-se em tratamento conservador, 43% em hemodiálise crónica e os restantes suspenderam diálise iniciada agudamente. Daqueles com DRT previamente conhecida, 18% morreram em casa. Não foi objetivada associação entre género, idade, cognição, status funcional, comorbilidades, etiologia da DRC ou modalidade de tratamento da DRT e o local de óbito. A anúria e a menor sobrevida após suspensão de diálise associaram-se a um fim de vida no hospital e verificámos uma tendência para o fim de vida em casa nos doentes com mais tempo de acompanhamento pela ECP. Conclusão: O fim de vida no domicílio é possível num programa domiciliário de cuidados paliativos, independentemente de idade, sexo, etiologia da DRC, principais comorbilidades e modalidade de tratamento. A anúria e o menor tempo de sobrevida após suspensão da TRS podem ser fatores limitantes. Um acompanhamento mais longo em cuidados paliativos pode favorecer o fim de vida no domicílio.

Percepción sobre la formación en cuidados paliativos de los estudiantes de las especializaciones de Cirugía general en Colombia / Perception of palliative care training among students of General Surgery specializations in Colombia

Introducción. Los cuidados paliativos responden al sufrimiento de pacientes terminales y requieren personal entrenado para la intervención. Forman parte de la actividad en cirugía, sin embargo, no encontramos información sobre la educación de postgrado en cirugía en Colombia. El objetivo de este estudio fue evaluar el nivel de conocimientos en cuidados paliativos, la calidad de la formación y las estrategias pedagógicas en los residentes. Métodos. Estudio observacional con recolección de la información autodiligenciada por medio electrónico. Resultados. Participaron 228 residentes, 7,8 % mencionaron asistir a rotación en cuidado paliativo y 66,6 % tener contacto con especialistas en cuidados paliativos. El 30,7 % no identificó una estrategia pedagógica clara. El 29,3 % tuvo alto nivel de conocimiento y 21,1 % adecuada calidad de formación. El 83,8 % tuvo un alto nivel en el manejo de obstrucción intestinal. No hubo asociación entre el nivel de conocimiento y las variables evaluadas (p>0,05). Conclusiones. Ni el aprendizaje recibido, ni el año de entrenamiento tuvieron efecto en el nivel percibido de conocimiento. Las competencias en cuidados paliativos, sus métodos y la calidad del aprendizaje son deficientes a nivel de postgrado en cirugía en Colombia. Probablemente está en un currículo oculto. Es necesario implementar estrategias pedagógicas en los currículos de estudios de los programas de formación de cirujanos.

Introduction. Palliative care responds to the suffering of terminal patients and requires trained personnel for intervention. They are part of the activity in surgery; however, we did not find information about postgraduate education in surgery in Colombia. The objective of this study was to evaluate the level of knowledge in palliative care, the quality of training and pedagogical strategies in residents. Methods. Observational study with self-completed information collection by electronic means. Results. A total of 228 residents participated, 7.8% mentioned a palliative care rotation and 66.6% mentioned having contact with palliative care specialists; 30.7% did not identify a clear pedagogical strategy; 29.3% had a high level of knowledge and 21.1% had adequate quality of training; 83.8% had a high level in the management of intestinal obstruction. There was no association between the level of knowledge and the variables evaluated (p>0.05). Conclusions. Neither the learning received nor the year of training had an effect on the perceived level of knowledge. Competencies in palliative care, its methods and the quality of learning are deficient at the postgraduate level in surgery in Colombia. It is probably on a hidden resume. It is necessary to implement pedagogical strategies in the study curricula of surgeon training programs.

Nutrición parenteral domiciliaria en pacientes con obstrucción intestinal maligna / Consideraciones éticas Home parenteral nutrition in patients with malignant bowel obstruction. Ethical considerations

Introducción: los pacientes con cáncer constituyen uno de los principales grupos de pacientes dentro de los programas de nutrición parenteraldomiciliaria (NPD). Existe un grupo de pacientes con obstrucción intestinal maligna (OIM) en quienes el uso de la NPD es controvertido. Desdeel Grupo de ética de la SENPE se revisan las cuestiones éticas detrás de la decisión de iniciar la NPD en un paciente con OIM y se propone unapropuesta de acción.Método: se procedió a hacer una revisión crítica de la literatura, tras la cual se diseñaron las preguntas que este documento pretendía responder:¿Está indicado el uso de la NPD en pacientes con OIM? ¿En qué situaciones? Quedarían otros aspectos que también merecen una reflexión:¿Cualquier oncólogo puede enviar a un paciente a su domicilio con NPD? ¿Debe ser el programa de formación de los cuidados en la NPD igualque el referente a los pacientes con fracaso intestinal de causa benigna? ¿Se debe suspender la NPD en algún momento?Resultados: la NPD en pacientes con OIM consigue mejores resultados en aquellos con una buena situación funcional (índice de Karnofsky≥ 50 o ECOG ≤ 2), con un pronóstico vital superior a 2-3 meses e, idealmente, con niveles de marcadores inflamatorios bajos. En los escasostrabajos publicados en los que se valoran las ventajas sobre la calidad de vida, se concluye que la NPD permite a los pacientes disponer de untiempo valioso en su domicilio pero a costa de una carga significativa para ellos mismos y sus familias.Propuesta de acción: una vez considerado como candidato a la NPD, se debe tener una conversación abierta con el paciente y sus familiaresen la que se aborden los beneficios potenciales, las implicaciones prácticas y los riesgos. En esa conversación inicial debe también plantearse enqué momento considerar la retirada de la NPD. El responsable de la NPD es el equipo de soporte domiciliario en colaboración con el de nutriciónclínica.(AU)

Background: patients with cancer are one of the main group of patients on home parenteral nutrition (HPN). Patients with malignant bowelobstruction (MBO) represent a challenging group when considering HPN. At the Ethics Working Group of SENPE ethical considerations on thissubject were reviewed and a guidelines proposal was made.Methods: a literature search was done and a full set of questions arose: When, if ever, is HPN indicated for patients with MBO? How shouldthe training program be? When withdrawal of HPN should be considered? Other questions should be also taken into consideration. May anyOncologist send home a patient with HPN? The educational program could be shortened? When considering to withdraw parenteral nutrition?Results: HPN in MBO has better outcomes when patients have a good functional status (Karnofsky ≥ 50 or ECOG ≤ 2), expected survival > 2-3months, and low inflammatory markers. Very few data have been reported on quality of life, but HPN allows a valuable time at home albeit witha considerable burden for both patients and their families.Proposal: once a patient is considered for HPN, there is a need for a deep talk on the benefits, complications and risks. In this initial talk, whenHNP should be stopped needs to be included. The palliative care team with the help of the nutrition support team should follow the patient, whoseclinical status must be assessed regularly. HPN should be withdrawn when no additional benefits are achieved.Conclusion: HPN may be considered an option in patients with MBO when they have a fair or good functional status and a desire to spendtheir last days at home.(AU)

Emergências em cuidados paliativos ­ variáveis de contexto no ato de paliar / Emergencies in palliative care - contextual variables in the act of palliation

Emergências Clínicas em Cuidados Paliativos, são todas as circunstâncias que colocam a pessoa em necessidade de ser paliado, ou seja, conjunto de procedimentos, inserido no contexto e conceito de ato de enfermagem (Regulamento n.º 613/2022, de 8 de julho), e que diz respeito a todas as interações autónomas ou interdependentes, em contexto de Cuidados Paliativos. A análise da tipologia destas ocorrências, é pertinente para a equipa de saúde em geral, e para a enfermagem em particular, no sentido de reconhecer a profundidade de Cuidados Paliativos necessários, duração de internamentos e necessidade de recursos em geral. Objetivos: Analisar a incidência da tipologia de Emergências em Cuidados Paliativos e conhecer as variáveis sociodemográficas, clínicas e de contexto cuidativo, que determinam esses episódios. Metodologia: Estudo retrospetivo, transversal, quantitativo e descritivo, a partir da recolha de dados em processos clínicos, através do "Inventário das variáveis de contexto no ato de paliar, em Emergências em Cuidados Paliativos" (Rodrigues, M. J. B. & Veiga- Branco, M. A. R., 2023), relativos a uma amostra de 360 episódios de internamento na UCP da ULSNE, na janela temporal entre janeiro a dezembro de 2021. A recolha revela episódios relativos a 286 pessoas internadas, maioritariamente do sexo masculino (N=223), e idade média de 75,3 anos, que devido à recorrência de internamentos equivale a 360 episódios. Residem, geralmente, em domicílio próprio, no concelho de Bragança. Os filhos são, normalmente, a pessoa de referência. Resultados: Relativamente à tipologia de Emergências em CP, verificou-se que as mais incidentes são as exéreses hemorrágicas (n=40) e dellirium (n=17), e o menos incidente é o Síndrome da Veia Cava Superior (n=1). Relativamente às variáveis clínicas ­ diagnose e metastização - verificou-se que são prevalentes, a neoplasia maligna do intestino (n=48), a neoplasia maligna do pâncreas, fígado e vias biliares (n=37) e ainda a neoplasia da próstata (n=33), e, a presença de metástases pulmonares (n=48), hepáticas (n=46) e/ou ganglionares (n=32) foram as mais frequentemente verificadas. As variáveis de contexto cuidativo prevalentes foram: (1) internamentos (+/-10 dias) para controlo sintomático da dor (n=53), e internamentos recorrentes. O Palliative Performance Score (PPS%) aquando da admissão foi, em média, de 30%, e, de 25% aquando da alta. No que respeita à alta clínica, foi verificado que 55,4% (n=93) dos internados, foram para o domicílio e 41 utentes, foram para Unidades de Cuidados Continuados (UCC). Durante a colheita de dados, 19,9% dos casos não tinha falecido. Conclusão: Os episódios hemorrágicos foram a tipologia de Emergência Clínica Paliativa mais frequente. E os refentes com metástases pulmonares/mediastínicas, com presença de traqueostomias ou nefrostomias, ou aqueles em situação de últimos dias de vida têm maior probabilidade de desenvolver situações de Emergências Clínicas Paliativas.

Clinical Emergencies in Palliative Care encompass all circumstances that require palliative care for the patient, meaning a set of procedures within the context and concept of nursing care (Regulation No. 613/2022, July 8), related to all autonomous or interdependent interactions in the context of Palliative Care. Analyzing the typology of these occurrences is essential for the healthcare team in general, and particularly for nursing, to recognize the depth of required Palliative Care, the duration of hospitalizations, and the need for resources in general. Objectives: To analyze the incidence of the typology of Emergencies in Palliative Care and understand the sociodemographic, clinical, and care context variables that determine these episodes. Methodology: A retrospective, cross-sectional, quantitative, and descriptive study was conducted by collecting data from clinical records using the "Inventory of context variables in the act of palliating in Palliative Care Emergencies" (Rodrigues, M. J. B. & Veiga-Branco, M. A. R., 2023). The data were related to a sample of 360 hospitalization episodes in the Palliative Care Unit (UCP) of ULSNE, within the time frame from January to December 2021. The data collection included episodes involving 286 hospitalized patients, mostly male (N=223), with an average age of 75.3 years. Due to the recurrence of hospitalizations, this equates to 360 episodes. These patients generally reside in their own homes in the Bragança municipality, with their children typically being the primary caregivers. Results: Regarding the typology of Emergencies in Palliative Care, the most common were hemorrhagic exeresis (n=40) and dellirium (n=17), while Superior Vena Cava Syndrome was the least common (n=1). Concerning clinical variables, malignant intestinal neoplasia (n=48), malignant pancreatic, hepatic, and biliary neoplasms (n=37), and prostate neoplasia (n=33) were prevalent, along with the presence of pulmonary (n=48), hepatic (n=46), and/or nodal (n=32) metastases. Prevalent care context variables included hospitalizations (+/-10 days) for symptomatic pain control (n=53) and recurrent hospitalizations. The Palliative Performance Score (PPS%) at admission averaged 30% and 25% at discharge. Regarding clinical discharge, it was found that 55.4% (n=93) of the patients were discharged to their homes, and 41 patients were transferred to Units of Continuous Care (UCC). During the data collection, 19.9% of cases had not yet deceased. Conclusion: Hemorrhagic episodes were the most common type of Clinical Palliative Emergency. Patients with pulmonary/mediastinal metastases, tracheostomies or nephrostomies, or those in their last days of life have a higher probability of developing Clinical Palliative Emergencies.

Fortalezas sistémicas y necesidades en atención paliativa domiciliaria: explorando la complejidad / Systemic strengths and needs in palliative home care: exploring complexity

Objetivo Nos proponemos investigar la relación entre las fortalezas sistémicas y el lugar de muerte en atención domiciliaria de pacientes en final de vida. Método Estudio cuantitativo descriptivo longitudinal de pacientes atendidos por un equipo domiciliario de cuidados paliativos. Se analizó la ubicación de la muerte en relación con la complejidad detectada tras la primera valoración domiciliaria usando el modelo de complejidad HexCom. Para la comparación de proporciones utilizamos la prueba de ji cuadrado de Pearson. Resultados Participaron 464 pacientes (74,4% oncológicos), edad media 76,2años (DE: 13,2). El 53% presentaban dependencia funcional total o severa, el 30,8% estaban ya encamados en la primera valoración y el 59,7% fallecieron en domicilio. Las fortalezas influyen en el lugar de muerte, sobre todo la fortaleza del exosistema (equipo) (OR: 4,07 [1,92-8,63]), la del microsistema (tanto la fortaleza del paciente (0,51 [0,28-0,94]) como de cuidador (OR: 3,90 [1,48-10,25]), y la del cronosistema, relativo a la previsión de un curso progresivo (OR: 2,22 [1,37-3,60]). Conclusiones Para mejorar la asistencia a los pacientes en situación de final de vida y sus familias es necesaria una mirada sistémica del morir y de la muerte que incluya tanto necesidades como fortalezas. En este sentido, el marco sistémico propuesto por Bonfrenbrenner puede ser de utilidad para la práctica clínica. (AU)

Objective We aimed to investigate the relationship between systemic strengths and complexity in home care of end-of-life patients. Methods Quantitative descriptive longitudinal study of patients cared for at home by a palliative care team. Place of death was analyzed in relation to complexity, as determined by the HexCom complexity model after the initial home assessment. We used Pearson's chi-square test to analyze the comparison of proportions. Results Forty-six hundred patients (74.4% oncologic) with a mean age of 76.2years (SD 13.2) participated. Fifty-three percent had complete or severe functional dependence, 30.8% were already bedridden in the first assessment, and 59.7% died at home. Strengths influenced place of death, specifically exosystem (team) strength (OR: 4.07 [1.92-8.63]), microsystem (both patient 0.51 [0.28-0.94]) and caregiver (OR: 3.90 [1.48-10.25]), and chronosystem, related to prediction of progressive course (OR: 2.22 [1.37-3.60]). Conclusions To improve care for end-of-life patients and their families, a systemic view of dying and death that includes both needs and strengths is necessary. In this sense, the systemic framework proposed by Bonfrenbrenner can be useful for clinical practice. (AU)

Fortalezas sistémicas y necesidades en atención paliativa domiciliaria: explorando la complejidad / Systemic strengths and needs in palliative home care: exploring complexity

Objetivo Nos proponemos investigar la relación entre las fortalezas sistémicas y el lugar de muerte en atención domiciliaria de pacientes en final de vida. Método Estudio cuantitativo descriptivo longitudinal de pacientes atendidos por un equipo domiciliario de cuidados paliativos. Se analizó la ubicación de la muerte en relación con la complejidad detectada tras la primera valoración domiciliaria usando el modelo de complejidad HexCom. Para la comparación de proporciones utilizamos la prueba de ji cuadrado de Pearson. Resultados Participaron 464 pacientes (74,4% oncológicos), edad media 76,2años (DE: 13,2). El 53% presentaban dependencia funcional total o severa, el 30,8% estaban ya encamados en la primera valoración y el 59,7% fallecieron en domicilio. Las fortalezas influyen en el lugar de muerte, sobre todo la fortaleza del exosistema (equipo) (OR: 4,07 [1,92-8,63]), la del microsistema (tanto la fortaleza del paciente (0,51 [0,28-0,94]) como de cuidador (OR: 3,90 [1,48-10,25]), y la del cronosistema, relativo a la previsión de un curso progresivo (OR: 2,22 [1,37-3,60]). Conclusiones Para mejorar la asistencia a los pacientes en situación de final de vida y sus familias es necesaria una mirada sistémica del morir y de la muerte que incluya tanto necesidades como fortalezas. En este sentido, el marco sistémico propuesto por Bonfrenbrenner puede ser de utilidad para la práctica clínica. (AU)

Objective We aimed to investigate the relationship between systemic strengths and complexity in home care of end-of-life patients. Methods Quantitative descriptive longitudinal study of patients cared for at home by a palliative care team. Place of death was analyzed in relation to complexity, as determined by the HexCom complexity model after the initial home assessment. We used Pearson's chi-square test to analyze the comparison of proportions. Results Forty-six hundred patients (74.4% oncologic) with a mean age of 76.2years (SD 13.2) participated. Fifty-three percent had complete or severe functional dependence, 30.8% were already bedridden in the first assessment, and 59.7% died at home. Strengths influenced place of death, specifically exosystem (team) strength (OR: 4.07 [1.92-8.63]), microsystem (both patient 0.51 [0.28-0.94]) and caregiver (OR: 3.90 [1.48-10.25]), and chronosystem, related to prediction of progressive course (OR: 2.22 [1.37-3.60]). Conclusions To improve care for end-of-life patients and their families, a systemic view of dying and death that includes both needs and strengths is necessary. In this sense, the systemic framework proposed by Bonfrenbrenner can be useful for clinical practice. (AU)

[Home parenteral nutrition in patients with malignant bowel obstruction. Ethical considerations]. / Nutrición parenteral domiciliaria en pacientes con obstrucción intestinal maligna. Consideraciones éticas.

Introduction: Background: patients with cancer are one of the main group of patients on home parenteral nutrition (HPN). Patients with malignant bowel obstruction (MBO) represent a challenging group when considering HPN. At the Ethics Working Group of SENPE ethical considerations on this subject were reviewed and a guidelines proposal was made. Methods: a literature search was done and a full set of questions arose: When, if ever, is HPN indicated for patients with MBO? How should the training program be? When withdrawal of HPN should be considered? Other questions should be also taken into consideration. May any Oncologist send home a patient with HPN? The educational program could be shortened? When considering to withdraw parenteral nutrition? Results: HPN in MBO has better outcomes when patients have a good functional status (Karnofsky ≥ 50 or ECOG ≤ 2), expected survival > 2-3 months, and low inflammatory markers. Very few data have been reported on quality of life, but HPN allows a valuable time at home albeit with a considerable burden for both patients and their families. Proposal: once a patient is considered for HPN, there is a need for a deep talk on the benefits, complications and risks. In this initial talk, when HNP should be stopped needs to be included. The palliative care team with the help of the nutrition support team should follow the patient, whose clinical status must be assessed regularly. HPN should be withdrawn when no additional benefits are achieved. Conclusion: HPN may be considered an option in patients with MBO when they have a fair or good functional status and a desire to spend their last days at home.

Introducción: Introducción: los pacientes con cáncer constituyen uno de los principales grupos de pacientes dentro de los programas de nutrición parenteral domiciliaria (NPD). Existe un grupo de pacientes con obstrucción intestinal maligna (OIM) en quienes el uso de la NPD es controvertido. Desde el Grupo de Ética de la SENPE se revisan las cuestiones éticas detrás de la decisión de iniciar la NPD en un paciente con OIM y se propone una propuesta de acción. Método: se procedió a hacer una revisión crítica de la literatura, tras la cual se diseñaron las preguntas que este documento pretendía responder: ¿Está indicado el uso de la NPD en pacientes con OIM? ¿En qué situaciones? Quedarían otros aspectos que también merecen una reflexión: ¿Cualquier oncólogo puede enviar a un paciente a su domicilio con NPD? ¿Debe ser el programa de formación de los cuidados en la NPD igual que el referente a los pacientes con fracaso intestinal de causa benigna? ¿Se debe suspender la NPD en algún momento? Resultados: la NPD en pacientes con OIM consigue mejores resultados en aquellos con una buena situación funcional (índice de Karnofsky ≥ 50 o ECOG ≤ 2), con un pronóstico vital superior a 2-3 meses e, idealmente, con niveles de marcadores inflamatorios bajos. En los escasos trabajos publicados en los que se valoran las ventajas sobre la calidad de vida, se concluye que la NPD permite a los pacientes disponer de un tiempo valioso en su domicilio pero a costa de una carga significativa para ellos mismos y sus familias. Propuesta de acción: una vez considerado como candidato a la NPD, se debe tener una conversación abierta con el paciente y sus familiares en la que se aborden los beneficios potenciales, las implicaciones prácticas y los riesgos. En esa conversación inicial debe también plantearse en qué momento considerar la retirada de la NPD. El responsable de la NPD es el equipo de soporte domiciliario en colaboración con el de nutrición clínica. La situación clínica debe evaluarse de forma periódica de manera que, cuando la NPD no proporcione ningún beneficio adicional, se plantee su retirada, manteniendo el resto de medidas de tratamiento sintomático paliativo. Conclusión: la NPD puede constituir una opción de tratamiento paliativo en pacientes con OIM con buena capacidad funcional y un deseo manifiesto de disponer de más tiempo en su domicilio en los últimos estadios de su enfermedad.

Validated medication deprescribing instruments for patients with palliative care needs palliative care: A systematic review. / [Artículo traducido] Instrumentos validados de desprescripción de medicamentos para los pacientes con necesidades de cuidados paliativos: una revisión sistemática.

OBJECTIVES: Patients with life-limiting illnesses are prone to unnecessary polypharmacy. Deprescribing tools may contribute to minimizing negative outcomes. Thus, the aims of the study were to identify validated instruments for deprescribing inappropriate medications for patients with palliative care needs and to assess the impact on clinical, humanistic, and economic outcomes. METHODS: A systematic review was conducted in LILACS, PUBMED, EMBASE, COCHRANE, and WEB OF SCIENCE databases (until May 2021). A manual search was performed in the references of enrolled articles. The screening, eligibility, extraction, and bias risk assessment were carried out by two independent researchers. Experimental and observational studies were eligible for inclusion. RESULTS: Out of the 5,791 studies retrieved, after excluding duplicates (n = 1,050), conducting title/abstract screening (n = 4,741), and full reading (n = 41), only one study met the inclusion criteria. In this included study, a randomized controlled trial was conducted, which showed a high level of bias risk overall. Adults 75 years or older (n = 130) with limited life expectancy and polypharmacy were allocated to two groups [intervention arm (deprescribing); and control arm (usual care)]. Deprescribing was performed with the aid of the STOPPFrail tool. The mean number of inappropriate medications and monthly medication costs were significantly lower in the intervention arm. No statistically significant differences were found in terms of unscheduled hospital presentations, falls, fractures, mortality, and quality of life. CONCLUSIONS: Despite the availability of several instruments to support deprescribing in patients with palliative care needs, only one of them has undergone validation and robust assessment for effectiveness in clinical practice. The STOPPFrail tool appears to reduce the number of inappropriate medications for older people with limited life expectancy (and probably palliative care needs) and decrease the monthly costs of pharmacotherapy. Nevertheless, the impact on patient safety and humanistic outcomes remain unclear.

Validated medication deprescribing instruments for patients with palliative care needs: a systematic review.

OBJECTIVES: Patients with life-limiting illnesses are prone to unnecessary polypharmacy. Deprescribing tools may contribute to minimizing negative outcomes. Thus, the aims of the study were to identify validated instruments for deprescribing inappropriate medications for patients with palliative care needs and to assess the impact on clinical, humanistic, and economic outcomes. METHODS: A systematic review was conducted in LILACS, PUBMED, EMBASE, COCHRANE, and WEB OF SCIENCE databases (until May 2021). A manual search was performed in the references of enrolled articles. The screening, eligibility, extraction, and bias risk assessment were carried out by 2 independent researchers. Experimental and observational studies were eligible for inclusion. RESULTS: Out of the 5791 studies retrieved, after excluding duplicates (n = 1050), conducting title/abstract screening (n = 4741), and full reading (n = 41), only 1 study met the inclusion criteria. In this included study, a randomized controlled trial was conducted, which showed a high level of bias risk overall. Adults 75 years or older (n = 130) with limited life expectancy and polypharmacy were allocated to 2 groups [intervention arm (deprescribing); and control arm (usual care)]. Deprescribing was performed with the aid of the STOPPFrail tool. The mean number of inappropriate medications and monthly medication costs were significantly lower in the intervention arm. No statistically significant differences were found in terms of unscheduled hospital presentations, falls, fractures, mortality, and quality of life. CONCLUSIONS: Despite the availability of several instruments to support deprescribing in patients with palliative care needs, only 1 of them has undergone validation and robust assessment for effectiveness in clinical practice. The STOPPFrail tool appears to reduce the number of inappropriate medications for older people with limited life expectancy (and probably palliative care needs) and decrease the monthly costs of pharmacotherapy. Nevertheless, the impact on patient safety and humanistic outcomes remain unclear.

Garantizar el derecho a una muerte segura y culturalmente adecuada: el sentido de las ocupaciones en la tríada vida-muerte-renacimiento desde la visión indígena Colombiana / Garantindo o direito a uma morte segura e culturalmente apropriada: o significado das ocupações na tríade vida-morte-renascimento a partir da visão indígena colombiana / Guaranteeing the right to a safe and culturally appropriate death: the meaning of occupations in the life-death-rebirth triad from the Colombian indigenous perspective

Resumen El valor espiritual atribuido a la muerte, para los guardianes del corazón del mundo en la Sierra Nevada de Santa Marta, Colombia, como en otras culturas indígenas, integra una preparación social, física, ética, ecológica y emocional para hacer un acompañamiento saludable a la vida después de la muerte. Su importancia va mucho más allá de una visión relacionada con hechos espectaculares o la desmitificación de su cosmovisión como "pobre o vulnerable". A través de una reflexión situada de los procesos de salud, enfermedad y cuidado en el contexto indígena del final de la vida, proponemos considerar el sentido de las ocupaciones en la tríada vida - muerte - renacimiento, para garantizar el derecho a una muerte segura y culturalmente adecuada. La dimensión ocupacional, como agente de construcción e interpretación de los significados colectivos de las comunidades indígenas a través de la espiritugogía precedida por su ancestralidad, puede ofrecer otras perspectivas interculturales de cuidados paliativos milenarios y un seguimiento diferenciado y respetuoso por parte de los sistemas de salud.

Resumo O valor espiritual atribuído à morte, pelos guardiões do coração do mundo na Serra Nevada de Santa Marta, Colômbia, como em outras culturas indígenas, integra uma preparação social, física, ética, ecológica e emocional para fazer um acompanhamento saudável para a vida após a morte. Sua importância vai muito além de uma visão relacionada a eventos espetaculares ou a desmistificação de sua visão de mundo como "pobres ou vulneráveis". Por meio de uma reflexão situada dos processos de saúde, doença e cuidado no contexto indígena do final da vida, propomos considerar o significado das ocupações na tríade vida - morte - renascimento, para garantir o direito a uma morte segura e culturalmente apropriada. A dimensão ocupacional, como agente de criação e interpretação dos significados coletivos das comunidades indígenas por meio da espiritugogía precedida por sua ancestralidade, pode oferecer outras perspectivas interculturais de cuidados paliativos milenares e um acompanhamento diferenciado e respeitoso pelos sistemas de saúde.

Abstract The spiritual value attributed to death, by the guardians of the heart of the world in Sierra Nevada de Santa Marta, Colombia, as in other indigenous cultures, integrates a social, physical, ethical, ecological, and emotional preparation to make a healthy accompaniment to life after death. Its importance goes far beyond a vision related to spectacular events or the demystification of the indigenous worldview as being considered "poor or vulnerable". Through a situated reflection of the health, illness and care processes within an indigenous context at the end of life, we propose to consider the meaning of occupations in the triad of life - death - rebirth, to ensure a compliance with the right of one that alludes to the meaning of a safe and culturally appropriate death. The occupational dimension, as an agent for creating and interpreting the collective meanings of indigenous communities through the espiritugogía preceded by their ancestry, can offer other intercultural perspectives of ancient palliative care and differentiated and respectful support by health systems.