Cuidados Paliativos em hospital oncológico de referência: atenção primária, diagnóstico tardio e mistanásia / Palliative Care in a referral oncology hospital: Primary Health Care, late diagnoses and mysthanasia

RESUMO Estudo retrospectivo, observacional, transversal que analisou os encaminhamentos de 120 pacientes oncológicos para uma equipe de Cuidados Paliativos (CP) em hospital público de referência em oncologia no norte do Paraná, em fevereiro de 2020. Os dados foram coletados nos prontuários e analisados com base no suporte teórico da bioética. Observou-se que expressiva maioria dos pacientes 82,5% chegou ao hospital com doença avançada e 59,7% foram encaminhados para CP em menos de seis meses após a entrada no serviço. Parte importante dos pacientes chegou sem possibilidade de terapia específica oncológica, sendo, por isso, rapidamente encaminhados aos CP. Esses e outros achados da pesquisa sustentam uma discussão entre cuidados paliativos, atenção primária à saúde e diagnóstico oncológico tardio. O artigo conclui que, no contexto dos CP, as mortes relacionadas ao diagnóstico oncológico tardio, antecedidas de sofrimentos evitáveis e decorrentes de falhas estruturais em políticas públicas de saúde, expressam uma problemática forma de mistanásia.

ABSTRACT This retrospective study analyzed the referrals of 120 cancer patients to a Palliative Care (PC) team in a public oncology referral hospital in northern in northern Paraná, in February 2020. It was observed that the vast majority of patients (82.5%) arrived at the hospital with advanced disease, while 59.7% were referred to PC in less than six months after entering the service. An important part of the patients arrived with no possibility of specific oncological therapy, and were therefore quickly referred to PC. These and other research data support a discussion between palliative care, primary health care and late cancer diagnosis. The article concludes that, in the context of PC, deaths related to late cancer diagnosis, preceded by avoidable suffering due to structural failures in public health policies, are characterized as a problematic form of mysthanasia.

Adaptation and validation of the Brazilian version of the Measure of Moral Distress for Healthcare Professionals (MMD-HP BR) in the context of palliative care.

BACKGROUND: The Measure of Moral Distress for Health Care Professionals (MMD-HP) scale corresponds to the update of the globally recognized Moral Distress Scale-Revised (MDS-R). Its purpose is to measure moral distress, which is a type of suffering caused in a professional prevented from acting according to one's moral convictions due to external or internal barriers. Thus, this study has the objective to translate, culturally adapt, and validate the Brazilian version of the MMD-HP BR in the context of Palliative Care (PC). METHODS: The study had the following steps: translation, cross-cultural adaptation and validation. The MMD-HP BR is composed of 27 Likert-rated items for frequency and intensity of moral distress. In total, 332 health professionals who work in PC participated in the study, 10 in the pre-test stage, and 322 in the validation stage. RESULTS: It was possible to identify six factors, which together explain 64.75% of the model variation. The reliability of Cronbach's alpha was 0.942. In addition, the score was higher in those who are considering or have already left their positions due to moral distress, compared to those who do not or have never had such an intention. CONCLUSIONS: MMD-HP BR is a reliable and valid instrument to assess moral distress in the PC context. It is suggested that the scale be standardized in other healthcare contexts, such as clinical settings. In addition, further research on moral distress is encouraged to identify and reduce the phenomenon and its consequences.

The Mapping of Influencing Factors in the Decision-Making of End-of-Life Care Patients: A Systematic Scoping Review.

Decisions in end-of-life care are influenced by several factors, many of which are not identified by the decision maker. These influencing factors modify important decisions in this scenario, such as in decisions to adapt to therapeutic support. This presented scoping review aims to map the factors that influence end-of-life care decisions for adult and older adult patients, by a scoping review. The review was carried out in 19 databases, with the keyword 'clinical decision-making' AND 'terminal care' OR 'end-of-life care' and its analogues, including publications from 2017 to 2022. The study was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews. The search resulted in 3474 publications, where the presence of influencing factors in end-of-life decision-making for adults and the elderly was applied as a selection criterion. Fifty-four (54) of them were selected, which means 1.5% of all the results. Among the selected publications, 89 influencing factors were found, distributed in 54 (60.6%) factors related to the health team, 18 (20.2%) to patients, 10 (11.2%) related to family or surrogates and 7 (7.8%) factors related to the decision environment. In conclusion, we note that the decision-making in end-of-life care is complex, mainly because there is an interaction of different characters (health team, patient, family, or surrogates) with a plurality of influencing factors, associated with an environment of uncertainty and that result in a critical outcome, with a great repercussion for the end of life, making it imperative the recognition of these factors for more competent and safe decision-making.

Aspectos bioéticos relacionados aos cuidados de fim de vida: uma revisão integrativa

esta é uma revisão integrativa da literatura que tem como objetivo ressaltar e discutir os aspectos bioéticos relacionados com a atenção ao paciente no final da vida no contexto brasileiro. Em específico, pretende-se identificar as circunstâncias relacionadas com esses aspectos bioéticos, bem como seus fatores desencadeantes. Foram selecionadas publicações de autores brasileiros, publicadas entre 2014 e 2020. A busca foi realizada em outubro de 2020, por meio das bases de dados eletrônicas PubMed e SciELO. Dos 231 artigos encontrados, 24 foram selecionados. Da análise temática, surgiram duas categorias que compreendem os aspectos bioéticos: "(não) morrer com dignidade" e "obstinação e futilidade terapêuticas". Foram identificadas seis circunstâncias relacionadas com esses aspectos bioéticos e 15 fatores desencadeantes. Os aspectos foram associados principalmente à não aceitação da morte, às falhas na formação acadêmica dos profissionais de saúde e ao insuficiente conhecimento sobre os conceitos e práticas em cuidados paliativos. Portanto, integrar o ensino da bioética na formação e na prática profissionais se torna fundamental para o cuidado dos pacientes no final da vida.

this integrative review of the literature aims to highlight and discuss the bioethical aspects of end-of-life patient care in the Brazilian context. Specifically, it seeks to identify the circumstances related to these bioethical aspects and their triggering factors. Publications by Brazilian authors published between 2014 and 2020 were selected. The search was conducted in October 2020 through PubMed and SciELO electronic databases. Of the 231 articles found, 24 were selected. Two categories comprising bioethical aspects emerged from the thematic analysis: "(not) dying with dignity" and "therapeutic obstinacy and futility." Six circumstances related to these bioethical aspects and 15 triggering factors were identified. The aspects were mainly associated with the non-acceptance of death, failures in the academic training of health professionals, and insufficient knowledge about palliative care concepts and practices. Therefore, integrating bioethics teaching in professional training and practice becomes fundamental for the care of patients at the end of life.

esta es una revisión integradora de la literatura que tiene como objetivo resaltar y discutir los aspectos bioéticos relacionados con la atención al paciente al final de la vida en el contexto brasileño. Específicamente, busca identificar las circunstancias relacionadas con estos aspectos bioéticos, así como sus factores desencadenantes. Se seleccionaron publicaciones de autores brasileños, publicadas entre 2014y 2020. La búsqueda se realizó en octubre de 2020, a través de las bases de datos electrónicas PubMed y SciELO. De los 231 artículos encontrados, 24 fueron seleccionados. Del análisis temático surgieron dos categorías que comprenden los aspectos bioéticos: "(no) morir con dignidad" y "obstinación y futilidad terapéuticas". Se identificaron seis circunstancias relacionadas con estos aspectos bioéticos y 15 factores desencadenantes. Los aspectos se asociaron principalmente a la no aceptación de la muerte, las fallas en la formación académica de los profesionales de salud y el insuficiente conocimiento sobre los conceptos y prácticas en cuidados paliativos. Por lo tanto, integrar la enseñanza de la Bioética en la formación y práctica profesionales se vuelve fundamental para el cuidado de los pacientes al final de la vida.

Diretivas antecipadas de vontade: amparo bioético às questões éticas em saúde / Advance directives of will: bioethical support for ethical health issues / Directivas anticipadas de voluntad: apoyo bioético a aspectos éticos en salud

Resumo Trata-se de estudo exploratório, transversal, de abordagem quantitativa, com participação de 143 médicos(as) e enfermeiros(as). Foi aplicado questionário eletrônico em plataforma on-line, objetivando analisar o contexto atual de implementação das diretivas antecipadas de vontade no Brasil a partir da percepção dos participantes. Os resultados mostraram que os profissionais com formação em cuidados paliativos têm maior conhecimento das diretivas antecipadas (p<0,05) e maior facilidade em aceitá-las e implementá-las (p<0,001). Dentre aqueles que responderam ter receio de aplicar as diretivas antecipadas (n=27), 15 referiram que essa preocupação está relacionada a questões legais, e quatro, a questões éticas. Conclui-se que saber o que são as diretivas torna mais simples o processo de deliberação com o paciente, sendo os conhecimentos em bioética um dos pilares para embasar a decisão de profissionais no momento de escolher a melhor conduta a ser adotada.

Abstract This is an exploratory, cross-sectional study with a quantitative approach, with the participation of 143 physicians and nurses. An electronic questionnaire was applied on an online platform to analyze the current context of implementation of advance directives of will in Brazil from the perception of the participants. The results showed that professionals with training in palliative care have greater knowledge of advance directives (p<0.05) and feel easier to accept and implement them (p<0.001). Among those who answered that they were afraid to apply the advance directives (n=27), 15 reported that this concern is related to legal issues, and four to ethical issues. We conclude that knowing what the directives are makes the process of deliberation with the patient simpler, and knowledge in bioethics is one of the pillars to support the decision of professionals when choosing the best conduct to be adopted.

Resumen Este estudio es exploratorio, transversal, de naturaleza cuantitativa, en que participó 143 médicos(as) y enfermeros(as). Se aplicó el cuestionario electrónico en una plataforma en línea para analizar el actual contexto de aplicación de las directivas anticipadas de voluntad en Brasil desde la percepción de los participantes. Los resultados mostraron que los profesionales con formación en cuidados paliativos tienen mayor conocimiento de las directivas anticipadas (p<0,05) y mayor facilidad para aceptarlas y aplicarlas (p<0,001). De los que respondieron tener miedo a aplicar las directivas anticipadas (n=27), 15 dijeron que esta preocupación estuvo relacionada con aspectos legales, y cuatro, con aspectos éticos. Se concluyó que saber cuáles son las directivas simplifica el proceso de deliberación con el paciente, así el conocimiento en bioética es una de las bases que fundamenta la decisión de los profesionales al considerar la mejor conducta.

Quality of life in Brazilian elderly: an analysis of healthy aging from the perspective of Potter's global bioethics.

INTRODUCTION: Quality of Life (QOL) is essential for healthy aging and through the WHOQOL-Old, it is possible to analyze factors that increase vulnerability and reduce QOL. Aligned with healthy aging is Potter's global bioethics proposing expanded ethics and social justice. OBJECTIVE: To analyze the QOL of Brazilian elderly from the perspective of Potters global bioethics. METHOD: Analytical observational research with a quantitative approach composed of 280 Brazilian, aged 60 or over, of both gender, volunteers, who answered the WHOQOL-Old online. RESULT: Global score of 77.9%, with the mean ± standard deviation: Functioning of the senses 86% (17.22 ± 2.80); Autonomy 78.5% (15.7 ± 2.60); Past, present, and future activities 77.3% (15.46 ± 2.34); Social participation 74.9% (14.99 ± 2.62); Death and dying 71.6% (14.33 ± 3.88) and Intimacy 79.1% (15.82 ± 2.82). CONCLUSION: Elderly perceived their QOL positively. In the quest to promote healthy aging, it is necessary to broaden the vision for social justice proposed by Potters global bioethics.

Covid-19 e ageísmo: avaliação ética da distribuição de recursos em saúde / Covid-19 and ageism: ethical assessment of health resources distribution / Covid-19 y edadismo: evaluación ética de la distribución de los recursos sanitarios

Resumo "Ageísmo" é o preconceito ou discriminação contra a pessoa idosa, seja por meio da estigmatização ou de práticas discriminatórias da sociedade e de suas instituições. No atual contexto da pandemia de covid-19, a postura ageísta da sociedade ocidental e, consequentemente, dos protocolos para distribuição de recursos em saúde tem sido fortemente evidenciada, trazendo consigo prejuízo importante à assistência a essa população. Este ensaio teórico discute manifestações e consequências do ageísmo em políticas de distribuição de recursos na pandemia, pensando as implicações bioéticas desse tipo de discriminação no que se refere aos princípios da justiça e da dignidade humana.

Abstract Ageism is the prejudice or discrimination of older adults, whether through stigmatization or discriminatory practices by society and its institutions. The current covid-19 pandemic context has shown Western society's ageist stance and, consequently, of its protocols on the distribution of health resources, leading to severe negative repercussions to the care of this population. This theoretical essay discusses the manifestations and consequences of ageism in the context of health resource distribution policies during the pandemic, considering the bioethical implications involved in this type of discrimination when considering the principles of justice and human dignity.

Resumen El "edadismo" se refiere al prejuicio y discriminación a las personas mayores, ya sea por estigmatización o prácticas discriminatorias por parte de la sociedad y sus instituciones. En el contexto actual de la pandemia de covid-19, se ha evidenciado fuertemente la postura edadista de la sociedad occidental y, en consecuencia, de los protocolos que involucran la distribución de los recursos en salud, trayendo consigo un daño importante a la atención en salud de esta población. Este ensayo teórico discute las manifestaciones y consecuencias del edadismo en el contexto de las políticas de distribución de recursos en salud en la pandemia, considerando las implicaciones éticas de esa discriminación respecto a los principios de justicia y dignidad humana.

Circumstances Related to Moral Distress in Palliative Care: An Integrative Review.

BACKGROUND: The practice of palliative care is involved with ethical conflicts related to the life-death process and relief of suffering. The inability to act in the face of such dilemmas, due to internal or external barriers, can cause moral distress in the healthcare professionals. OBJECTIVE: The purpose of this integrative review is to analyze which circumstances cause moral distress in healthcare professionals who work in palliative care. METHODS: An integrative review of the literature was made in the SCIELO and PubMed databases, based on the descriptors "palliative care" and "moral distress." Articles published between 2015-2020, in Portuguese, Spanish and English were included, following the PRISMA criteria. RESULTS: From a selection of 97 documents, 56 were completed reviewed and 23 studies were included in the review. Most articles refer to the nursing area, followed by multidisciplinary studies. The circumstances related to moral distress were identified involving: personal aspects; patients and caregivers; team; environment and organization. Communication problems, lack of resources and witnessing professionals giving false hope to patient and family members were the events related to moral distress most mentioned by the articles in the review. Recommendations for reducing and preventing moral distress include empowerment and educational programs in bioethics and palliative care. CONCLUSIONS: Moral distress is an evident phenomenon in palliative care, involving different situations that can impact on quality-of-care provided as well as the well-being of the healthcare professionals.

Pessoas com deficiência: eugenia na imigração do início do século XX / People with disabilities: eugenics in the early 20th century immigration / Personas con discapacidad: la eugenesia en la inmigración de principios del siglo XX

Resumo Frequentemente as ideias eugênicas ressurgem, colocando em questão a aceitação do diferente. Travestidas de "melhoramento", hoje retornam sob a promessa de aperfeiçoamento genético. Nesse contexto, é preciso ressaltar os direitos da pessoa com deficiência, pois embora aparentemente não representem mais um "problema" para a sociedade, o preconceito e a discriminação permanecem. A partir do relato de grupo familiar de imigrantes portugueses que enfrentaram dificuldades para entrar no Brasil em razão da filha deficiente visual, este artigo traça panorama histórico das ideias eugênicas até os dias de hoje. Por fim, reafirma-se a importância de constatar e combater o eugenismo pela reflexão ética.

Abstract Eugenic ideas reemerge intermittently, calling into question the acceptance of the different. Now, the term returns, this time disguised as genetic "improvement". In this context, it is necessary to highlight the rights of people with disabilities because, although they no longer seem to constitute a "problem" to society, prejudice and discrimination still remain. From the report of a family of Portuguese immigrants who faced difficulties to be granted permission to enter Brazil because one of the children had visual impairment, this paper outlines a historical overview of eugenic ideas to this date. Finally, the importance of identifying and combating eugenics through an ethical reflection is reaffirmed.

Resumen Frecuentemente, las ideas eugenésicas resurgen poniendo en cuestión la aceptación de lo diferente. Travestidas de "mejoramiento", hoy retornan bajo la promesa de perfeccionamiento genético. En este contexto, es necesario resaltar los derechos de la persona con discapacidad, pues, aunque aparentemente ya no representan un "problema" para la sociedad, el prejuicio y la discriminación permanecen. A partir del relato de un grupo familiar de inmigrantes portugueses que enfrentó dificultades para entrar en Brasil, debido a una hija con deficiencia visual, este artículo traza un panorama histórico de las ideas eugenésicas hasta los días actuales. Finalmente, se reafirma la importancia de constatar y combatir el eugenismo a partir de la reflexión ética.

Bioética e direito humano à alimentação adequada na terapia nutricional enteral / Bioethics and the human right to adequate feeding during enteral nutritional therapy / Bioética y derecho humano a la alimentación adecuada en la terapia nutricional enteral

Resumo Este estudo objetiva refletir à luz da bioética a incorporação do conceito de direito à alimentação adequada no âmbito da terapia nutricional enteral. Trata-se de estudo longitudinal realizado com pacientes em nutrição enteral internados em hospital universitário brasileiro. O respeito a esse direito foi verificado a partir da análise de adequação da dieta oferecida aos pacientes. Os resultados demonstram que menos da metade dos pacientes recebeu dieta adequada (quantidade e qualidade), principalmente por fatores ligados a doenças e ao tratamento (diarreia, náuseas e vômitos, estase gástrica, jejum para exames/procedimentos). Entretanto, observa-se que limitação de recursos financeiros e fragilidades na organização dos serviços contribuem para essa realidade. A terapia nutricional enteral evoluiu nas últimas décadas em relação a regulamentações e disponibilidade de produtos, porém a análise bioética evidencia que há desafios a serem enfrentados para que o direito em questão seja garantido também no contexto clínico e terapêutico.

Abstract This study aims to reflect, in the light of bioethics, about the incorporation of the concept of human right to adequate food in the scope of enteral nutritional therapy. This is a longitudinal study performed with patients being fed through enteral nutrition who were admitted to a Brazilian University hospital. The respect for this right was checked by the analysis of the adequacy of the diet offered to the patients. The results show that less than half the patients received adequate diet (quantity and quality), mainly due to disease and treatment factors (diarrhoea, nausea and vomiting, gastric stasis, fasting for exams/procedures). However, it is observed that the limitation of financial resources and fragility in the organisation of services contribute to this reality. Enteral nutritional therapy has evolved in recent decades in relation to regulations and availability of products, but bioethical analysis shows that there are challenges to be faced in order to ensure that the right in question is also guaranteed in the clinical and therapeutic context.

Resumen Este estudio tiene como objetivo reflexionar, a la luz de la bioética, sobre la incorporación del concepto de derecho a la alimentación adecuada en el contexto de la terapia nutricional enteral. Se trata de un estudio longitudinal, realizado en pacientes con nutrición enteral internados en un hospital universitario brasileño. El respeto a este derecho se verificó a partir del análisis de la adecuación de la dieta ofrecida a los pacientes. Los resultados muestran que menos de la mitad de los pacientes recibieron una dieta adecuada (cantidad y calidad), principalmente debido a complicaciones relacionadas con la enfermedad y el tratamiento (diarrea, náuseas y vómitos, estasis gástrica, ayuno para exámenes/procedimientos). Sin embargo, se observa que la limitación de los recursos financieros y las debilidades en la organización de los servicios contribuyen a esta realidad. La terapia nutricional enteral ha evolucionado en las últimas décadas en relación con las regulaciones y la disponibilidad de productos, sin embargo, el análisis bioético muestra que hay desafíos a ser enfrentados para que el derecho en cuestión esté garantizado en el contexto clínico y terapéutico.