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.

Portuguese Advance Directives-a twist against futility? A cross sectional study

ABSTRACT BACKGROUND: Advance Directive documents allow citizens to choose the treatments they want for end-of-life care without considering therapeutic futility. OBJECTIVES: To analyze patients' and caregivers' answers to Advance Directives and understand their expectations regarding their decisions. DESIGN AND SETTING: This study analyzed participants' answers to a previously published trial, conceived to test the document's efficacy as a communication tool. METHODS: Sixty palliative patients and 60 caregivers (n = 120) registered their preferences in the Advance Directive document and expressed their expectations regarding whether to receive the chosen treatments. RESULTS: In the patient and caregiver groups, 30% and 23.3% wanted to receive cardiorespiratory resuscitation; 23.3% and 25% wanted to receive artificial organ support; and 40% and 35% chose to receive artificial feeding and hydration, respectively. The participants ignored the concept of therapeutic futility and expected to receive invasive treatments. The concept of therapeutic futility should be addressed and discussed with both the patients and caregivers. Legal Advanced Directive documents should be made clear to reduce misinterpretations and potential legal conflicts. CONCLUSION: The authors suggest that all citizens should be clarified regarding the futility concept before filling out the Advance Directives and propose a grammatical change in the document, replacing the phrase "Health Care to Receive / Not to Receive" with the sentence "Health Care to Accept / Refuse" so that patients cannot demand treatments, but instead accept or refuse the proposed therapeutic plans. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT05090072 URL: https://clinicaltrials.gov/ct2/show/NCT05090072.

Qualitative Study on the Cognition Status of Organ Donors’ Family Members to Advance Care Planning / 中国医学伦理学

Discussing the cognition, attitude and influencing factors of the family members of organ donors towards advance care planning (ACP) to provide a basis for the further promotion of ACP in the field of organ donation. Using qualitative research methods, 8 family members of organ donors were selected purposefully for semi-structured interviews, and the 7-step of Colaizzi was used to analyze and summarize the themes of the interview data. The results showed that the cognition status of the family members of organ donors of ACP could be summarized into 3 themes: problems faced by ACP implementation, positive recognition of the implementation of ACP, factors affecting the promotion of ACP. Organ donors’ family members are unfamiliar with the concept of ACP and have unclear cognition, but think that the implementation of ACP is of positive significance. It is suggested to further strengthen the publicity of ACP, medical autonomy, death education, so as to promote the development of ACP and improve the willing to donate organ.

Is there interest of Mexican adults in being prepared should they develop Alzheimer's or other dementia? / ¿Existe interés en adultos mexicanos de preparase en caso de llegar a padecer Alzheimer u otra demencia?

Abstract Introduction Alzheimer's disease, as well as other dementias, cause a progressive deterioration of cognitive functions, preventing patients from making decisions and having control over themselves in an advanced stage of the disease. Objective To explore some expectations, wishes and preferences in a sample of mature adults should they develop Alzheimer or other dementia. Method We surveyed 368 mature Mexican adults without dementia using a large survey created by the authors and used in a previous study; data were collected in some public places where mature people were invited to participate. The survey was completed from July 2019 to August 2020. Results Although most participants had considered they might suffer from dementia in the future, less than half had communicated their wishes to their relatives about future medical treatments in case they could no longer decide for themselves; very few had prepared a written advance directive. Most participants agreed that patients should know their initial diagnosis, mainly to be able to prepare themselves. The main reason given by those who would prefer to hide the diagnosis was to avoid suffering. Discussion and conclusion Our results highlight the need for health professionals to promote discussion with people about the possibility of suffering from dementia, as well as the importance of making decisions in advance, and letting their relatives know about them.

Resumen Introducción La enfermedad de Alzheimer, así como las otras demencias, causan un deterioro progresivo de las funciones cognitivas, evitando que en una etapa avanzada de la enfermedad los pacientes puedan tomar decisiones y tener control sobre sí mismos. Objetivo Explorar algunas expectativas, deseos y preferencias en una muestra de adultos maduros en caso de que llegaran a desarrollar Alzheimer u otra demencia. Método Encuestamos a 368 adultos mexicanos maduros sin demencia usando una encuesta creada por los autores y utilizada en un estudio anterior; los datos se recopilaron en algunos lugares públicos donde se invitó a las personas a participar. La encuesta se aplicó de julio de 2019 a agosto de 2020. Resultados Aunque la mayoría de los participantes había considerado que podría sufrir demencia en el futuro, menos de la mitad había comunicado sus deseos a sus familiares sobre futuros tratamientos médicos en caso de que ya no pudieran decidir por sí mismos; muy pocos habían preparado una voluntad anticipada por escrito. La mayoría de los participantes estuvo de acuerdo en que los pacientes deben conocer su diagnóstico inicial, principalmente para poder prepararse. La principal razón aducida por quienes preferirían ocultar el diagnóstico fue el deseo de evitar sufrimiento. Discusión y conclusión Nuestros resultados destacan la necesidad de que el personal de salud promueva la discusión con las personas sobre la posibilidad de padecer demencia, así como la importancia de tomar decisiones por anticipado e informar de ellas a sus familiares.

Adecuación del esfuerzo terapéutico: retos en pediatría / Adequacy of therapeutic effort: Challenges in pediatrics

La adecuación del esfuerzo terapéutico reemplaza la expresión limitación terapéutica y se define como la decisión de no iniciar medidas diagnósticas y terapéuticas o de suspenderlas en respuesta a la condición del paciente, para evitar conductas potencialmente inapropiadas y redireccionar los objetivos de tratamiento hacia el confort y el bienestar. En la población pediátrica, esta decisión es aún más desafiante debido a la naturaleza de la relación médico-paciente-familia y a la escasez de guías que orienten su implementación. La adecuación del esfuerzo terapéutico está enmarcada en principios éticos y legales, pero existen diversos retos a nivel práctico. Cada proceso de adecuación es único y dinámico, y debe abordarse contemplando a quién realizarlo, cuándo, cómo y con qué medidas.

The term "therapeutic limitation" has been replaced by "adequacy of therapeutic effort" and is defined as the decision to withhold or withdraw diagnostic and therapeutic measures in response to the patient's condition, avoiding potentially inappropriate behaviors and redirectong treatment goals towards comfort and well-being. In the pediatric population, this decision is even more challenging given the nature of the physician-patient-family relationship and the paucity of guidelines to address treatment goals. The adequacy of therapeutic effort is framed by ethical and legal principles, but, in practice, there are several challenges. Each adequacy process is unique and dynamic, and should be addressed by taking into account with what measures, how, when, and in whom it should be implemented

Bioethics and advance directives in psychiatric in the hospital context / Bioética y directrices anticipadas en psiquiatría en el contexto hospitalario

Abstract Introduction Mental health services have been a focus of human rights advocates and recent legal reforms in some Latin American countries, which have called for a change from the paradigm of hospitalization to one of accompanying and supporting the person with mental health issues, which make it possible to apply the Advance Directives in Psychiatry (PADs). This change will require time, as well as economic, material, and human resources, and transformations in attitudes, culture, and society, but the implementation of PADs cannot be postponed: they must be used to protect the autonomy of the persons affected, within a bioethical framework. Objective Identify possible bioethical conditions in the prevailing conventional hospital context in Latin America that allow for an implementation of PADs. Method A participant-observer study was carried out in two psychiatric hospital services from June to September 2022. Results A thematic analysis found three themes: 1) clinical care, 2) patient predisposition, and 3) medical-legal questions. This study considered part of theme 2, including the following sub-themes: a) patient self-perception, b) biography/narrative versus diagnostic classification, and c) negotiation. Discussion and conclusion Prominent among the sub-themes discussed are recognition of the values of autonomy and its elements in all of the expressions of the person with mental illness, as well as actions of the physician or health care team in synergy with supported decision-making, a distinctive feature of the anticipatory process of the PAD.

Resumen Introducción La atención de la salud mental se ha visto emplazada por los Derechos Humanos y las recientes reformas legales en algunos países latinos, que instan a cambiar el paradigma asistencial de la hospitalización al del acompañamiento y apoyo en la toma de decisiones de la persona en condición mental, que posibilitan la aplicación de las Directrices Anticipadas en Psiquiatría (DAP). Este cambio implica tiempo, recursos económicos, materiales y humanos, transformaciones actitudinales, culturales y sociales. No obstante, la implementación de las DAP no puede postergarse, deben aplicarse basadas en el respeto a las personas en un marco bioético. Objetivo Identificar las condiciones bioéticas posibles en el contexto hospitalario convencional, imperante en los países de América Latina, que permitan la implementación de las DAP. Método Se llevó a cabo una observación participante en dos servicios de hospitalización psiquiátrica, entre junio y septiembre de 2022. Resultados A través de un análisis temático se obtuvieron tres temas: 1) atención clínica, 2) predisposición de los pacientes y 3) asuntos médicos-legales. Este estudio consideró sólo una parte del tema 2 con sus subtemas: a) Autopercepción de los pacientes, b) biografía/narrativa versus clasificación y c) negociación. Discusión y conclusión En los subtemas discutidos se resalta el reconocimiento a los valores de la autonomía y sus elementos presentes en todas las manifestaciones de la persona con enfermedad mental, se reconoce también el actuar del médico o equipo de salud en sinergia con la toma de decisiones apoyada, que distingue el proceso anticipatorio de las DAP.

Ethical principles and dilemmas in the discourse of healthcare practitioners involved with end-of-life care based on the Advanced Directives Document / Principios y dilemas éticos en los discursos de los profesionales de la salud familiarizados con la atención al final de la vida a partir del documento de voluntades anticipadas

Abstract Introduction: The Advanced Directives Document (ADD) is an efficient tool to plan for future medical care in case of a potential loss of autonomy. Ethical dilemmas arise in end-of-life care, including the principle of respect for autonomy and potential beneficence involved in health care, leading to moral distress of practitioners. Objective: To identify the ethical principles and dilemmas arising from the discourse of healthcare practitioners involved with end-of-life care based on the ADD. Methods: Qualitative study with a hermeneutics approach based on 253 answers to the following exploratory question: Are you willing to respect the ADD of an unconscious patient when you think that the patient may benefit otherwise? Results: Most practitioners acknowledge their respect for the ADD as an ethical obligation, whilst a minority consider it a legal right. For the large majority of practitioners, the ethical principles of respect for the ADD are recognized under the ethical theory of liberal individualism. Respect for autonomy is associated with the principle of non-maleficence and the value of human dignity. The principle of beneficence and the quality of life concept were presented as genuine moral dilemmas. A reversible clinical condition, the request for euthanasia, the family and the legibility of anticipated directives were submitted as apparent moral dilemmas. Conclusions. During the end-of-life decision making process, there are other valid ethical considerations beyond principlism. The dilemmas identified show the ethical complexity healthcare practitioners face based on the ADD.

Resumen Introducción: El Documento de Voluntades Anticipadas (DVA) es una herramienta eficaz para planificar la futura atención médica ante la posible pérdida de autonomía. En la atención al final de la vida surgen dilemas éticos; entre los cuáles se destacan el principio de respeto a la autonomía y la posible beneficencia que implica la atención en salud que conlleva angustia moral en los profesionales. Objetivo: Identificar los principios y dilemas éticos que emergen de los discursos de los profesionales de la salud familiarizados con la atención al final de la vida a partir del DVA. Metodología: Estudio cualitativo con enfoque hermenéutico de 253 respuestas a la pregunta exploratoria: ¿Está usted dispuesto a respetar un DVA en paciente inconsciente cuando usted cree que el paciente se beneficiaría de lo contrario? Resultados: Los profesionales en su mayoría reconocen el respeto al DVA como obligación ética, para una minoría como un derecho legal. Para la mayoría, los principios éticos de respeto al DVA se reconocen bajo la teoría ética del individualismo liberal. El respeto al agente autónomo se correlaciona con el principio de no maleficencia y el valor de la dignidad humana. El principio de beneficencia y el concepto de calidad de vida fueron expuestos como auténticos dilemas morales. La condición clínica reversible, la solicitud de eutanasia, la familia y la legibilidad de las voluntades anticipadas fueron expuestos como aparentes dilemas morales. Conclusiones: En el proceso de toma de decisiones al final de la vida existen otras perspectivas éticas válidas más allá del principialismo. Los dilemas identificados muestran la complejidad ética a la que se enfrentan los profesionales de la salud a partir del DVA.

Diretivas antecipadas de vontade na percepção de estudantes de Medicina / Advance directives in the perception of Medical students

Resumo: Introdução: A autonomia do paciente na tomada de decisões a respeito da sua vida e das condutas diagnósticas e terapêuticas na sua saúde tem sido objeto de valorização social crescente. As diretivas antecipadas de vontade surgem, então, como um meio de o paciente expressar sua última vontade, salvaguardando o princípio da autonomia. No processo de aprendizagem acadêmica, na maioria das escolas médicas, o acadêmico se compromete com a vida, e toda a sua capacitação é fundamentada em aspectos técnicos, e apenas uma pequena parte do currículo, quando presente, abrange conteúdo específico voltado para a terminalidade da vida. A medicina evoluiu com importantes avanços tecnológicos que resultaram em melhorias na qualidade de vida, porém também trouxeram um prolongamento questionável da vida, com tratamentos muitas vezes injustificáveis e com a obstinação terapêutica de manter a vida a qualquer custo. Objetivo: Este estudo teve como objetivo analisar a percepção de estudantes de Medicina sobre as diretivas antecipadas de vontade. Método: O instrumento de pesquisa foi elaborado com uma entrevista individual e semiestruturada, aplicada pela plataforma de pesquisa Google Forms. Por causa do período de pandemia pelo Sars-CoV-2, a pesquisa foi realizada de forma não presencial em conformidade com a legislação vigente nacional. Após fechamento da amostra por exaustão, analisaram-se as respostas de 13 estudantes. Resultado: Em conformidade aos elementos, passos e critérios metodológicos, as informações obtidas foram classificadas e dispostas em duas categorias: dignidade da pessoa humana e autonomia do paciente; e conhecimento sobre diretivas antecipadas de vontade. Conclusão: Essa análise qualitativa trouxe à tona importantes temas, como a regulamentação que norteia as diretivas antecipadas de vontade e os princípios que envolvem a bioética, a fim de consolidar o respeito, a autonomia e a dignidade do paciente que está, ou estará, passando pela terminalidade da vida.

Abstract: Introduction: The patient's autonomy in making decisions about their life and about diagnostic and therapeutic approaches related to their health has been the object of growing social value. Then advanced directives appear to express the patient's last will, safeguarding the Principle of Autonomy. During the undergraduate learning process, students are committed to life, and all of their training is based on technical aspects. Only a small part of the curriculum covers specific contents focused on terminal illness, when present. Medicine has evolved with important technological advances that resulted in quality-of-life improvement, but also brought a questionable extension of life, with often unjustifiable treatments and a therapeutic obstinacy to maintain life at any cost. Objective: The aim of this study is to analyze the perception of medical students about end-of-life directives. Method: A descriptive qualitative research was carried out through an individual and semi-structured interview, applied through Google forms. Due to the period of pandemic caused by the SARS-CoV-2, the survey was carried out remotely, in accordance with current national legislation. After the target was attained through sample exhaustion, the responses of 13 students were analyzed. Results: In accordance with the elements, steps and methodological criteria, the obtained information was classified and arranged into two categories: Human Dignity and Patient Autonomy; Knowledge of Advance Will Directives. Conclusion: This qualitative analysis brought to light important topics such as the regulation that guides advance will directives and principles that involve bioethics, to consolidate the respect, autonomy and dignity of the patient who is, or will be, undergoing the terminality of life.

Testamento vital sob a ótica de enfermeiros que assistem pacientes em situação de terminalidade / Living will from the perspective of nurses caring for terminally ill patients / El testamento vital en la perspectiva de los enfermeros que atienden a pacientes terminales

Objetivos: conhecer a representação do Testamento Vital para os enfermeiros que atuam na assistência à pacientes em situação de terminalidade. Métodos:estudo de abordagem qualitativa, realizado em hospital público universitário de alta complexidade localizado na cidade de São Paulo, São Paulo, Brasil, com 15 enfermeiros que atuam na assistência à pacientes terminais, por meio de entrevista norteada pela questão "Fale a respeito do Testamento Vital". A análise dos dados foi desenvolvida pelo Discurso do Sujeito Coletivo. Resultados: identificou-se três categorias que compõem o Discurso do Sujeito Coletivo dos enfermeiros em relação ao testamento vital: "o enfermeiro frente às diretivas antecipadas de vontade"; "o enfermeiro frente à família do paciente em terminalidade" e "o enfermeiro frente ao médico do paciente em terminalidade". Conclusão: o testamento vital representa, na perspectiva dos enfermeiros, a autonomia e o direito do paciente pelas decisões nas situações de terminalidade que devem ser compartilhadas com seus familiares e profissionais de saúde.

Objectives: to know the representation of the living will for nurses working in the care of terminally ill patients. Methods: a qualitative study conducted in a high complexity public university hospital located in the city of São Paulo, São Paulo, Brazil. An interview guided by the question "Talk about the living will" was performed with 15 nurses working in the care of terminally ill patients. Data analysis was performed using the Discourse of the Collective Subject. Results: three categories that make up nurses' Collective Subject Discourse in relation to living wills were identified: "the nurse before advance directives"; "the nurse before the terminally ill patient's family" and "the nurse before the terminally ill patient's physician". Conclusion: from the perspective of nurses, the living will represent the patient's autonomy and right to make decisions in terminally ill situations that must be shared with their family members and health professionals

Objetivos: conocer la representación del Testamento Vital para enfermeros que actúan en el cuidado de enfermos terminales. Métodos: estudio cualitativo realizado en un hospital universitario público de alta complejidad ubicado en la ciudad de São Paulo, São Paulo, Brasil. Se realizó una entrevista guiada por la pregunta "Hablemos del Testamento Vital" con 15 enfermeros que actúan en el cuidado de pacientes terminales. El análisis de los datos se realizó utilizando el Discurso del Sujeto Colectivo. Resultados: se identificaron tres categorías que componen el Discurso del Sujeto Colectivo de los enfermeros en relación a los testamentos vitales: "el enfermero frente a las directivas anticipadas"; "la enfermera frente a la familia del enfermo terminal" y "la enfermera frente al médico del enfermo terminal". Conclusión: en la perspectiva de los enfermeros, el testamento vital representa la autonomía y el derecho del paciente a tomar decisiones en situaciones terminales que deben ser compartidas con sus familiares y profesionales de la salud.

Diretivas antecipadas de vontade na perspectiva da população idosa de um município do meio oeste catarinense / Advance directives in the perspective of the older adults of a municipality in the Midwest of Santa Catarina

Resumo Objetivo Analisar o conhecimento da pessoa idosa em um município do meio oeste catarinense acerca da elaboração das Diretivas Antecipadas de Vontade (DAV), a sua preferência em relação aos modelos de preenchimento e a escolha do representante que irá substitui-la na tomada de decisão. Método Estudo transversal realizado por meio da disponibilização aos participantes de dois modelos de DAV para preenchimento e aplicação de um questionário sobre conhecimento, aceitação e avaliação do dispositivo. Resultados A maioria dos participantes (85,63%) desconhecia as DAV; 98,13% desconheciam os modelos do documento; 100% consideraram bom ou aceitável o modelo 1, mais completo; 66,88% indicaram um filho como representante legal. Questionados sobre a importância da elaboração, disponibilização à população e aprovação de lei que regulamente esse direito, as respostas foram afirmativas, respectivamente, para 91,88%, 91,25% e 91,25% dos participantes. Apenas 5% dos respondentes apontaram dificuldades no entendimento dos modelos, sendo a "linguagem" o item de maior dificuldade. Conclusão A maioria das pessoas idosas desconhecia os modelos de DAV, mas referiram o modelo 1, considerando-o bom ou aceitável. A maioria não teve dificuldades no entendimento e reconheceu a importância da elaboração e disponibilização das DAV à população, assim como a necessidade de uma lei para regulamentar esse direito. Observou-se uma alta proporção de participantes indicando um filho como representante legal, enfatizando a importância de envolver a família nesse processo. Esses resultados ressaltam a necessidade de conscientizar as pessoas idosas sobre as DAV e disponibilizar modelos claros e abrangentes.

Abstract Objective To analyze the knowledge of older individuals in a municipality in the Midwestern region of Santa Catarina regarding the development of Advance Directives, their preferences regarding the available models, and the selection of a representative to make decisions on their behalf. Method Cross-sectional study carried out by providing participants with two models of Advance Directives were made available to the participants for completion and applied a questionnaire on knowledge, acceptance, and evaluation of the device. Results There were 85.63% of the participants who were unaware of the Advance Directives, 98.13% who were unaware of document models, 100% who considered model 1, more complete, to be good or acceptable, and 66.88% who indicated an adult child as its representative. When asked about the importance of preparing, making available to the population, and passing a law that regulates this right, the participants were assertive respectively by 91.88%, 91.25% and 91.25%. Conclusion Most older people were unaware of the AD models, but mentioned model 1, considering it good or acceptable. Most had no difficulties in understanding and recognized the importance of preparing and making AD available to the population, as well as the need for a law to regulate this right. There was a high proportion of participants indicating an adult child as a legal representative, emphasizing the importance of involving the family in this process. These results highlight the need to make older people aware of AD and provide clear and comprehensive models.

Percepção de profissionais de saúde sobre diretivas antecipadas de vontade / Advanced directives as perceived by healthcare professionals / Percepción de los profesionales de la salud sobre las voluntades anticipadas

Resumo Diretivas antecipadas de vontade são instrumentos que buscam garantir antecipadamente o cumprimento dos desejos do paciente em circunstâncias em que ele não consiga se manifestar livremente. Neste trabalho investigou-se a percepção de profissionais de saúde sobre o uso dessa ferramenta em cuidados paliativos, além dos principais dilemas éticos e ganhos ou prejuízos decorrentes de seu uso. Foi realizada entrevista semidirigida com nove profissionais, e os dados foram submetidos à análise de conteúdo. Evidenciaram-se cinco categorias, que apontaram para uma boa receptividade do recurso, por assegurar o exercício da autonomia do paciente, fortalecendo a percepção do cuidado, facilitando as decisões e propiciando conforto psicológico. Por sua vez, as adversidades ou desafios envolveram necessidade de melhor preparo técnico e maior integração da equipe, sobrecarga profissional, insegurança jurídica com eventual uso do instrumento, finitude como tabu e desconhecimento da sociedade acerca do tema.

Abstract Advance directives are instruments that aim to ensure the fulfillment of patients' will in circumstances where they are unable to express themselves freely. This study investigated how health professionals perceive the use of this tool in palliative care, as well as the main ethical dilemmas and gains or losses related to it. Semi-directed interviews were conducted with nine professionals and the data underwent content analysis. Five categories emerged, pointing to a good reception of the resource, as it ensures patient autonomy, strengthening the perception of care, facilitating decisions and providing psychological comfort. On the other hand, the adversities or challenges involved the need for better technical preparation and greater team integration, professional overload, legal uncertainty about its use, end-of-life as a taboo and society's lack of knowledge about the subject.

Resumen Las voluntades anticipadas son herramientas para garantizar el cumplimiento de las decisiones del paciente cuando estos ya no pueden expresarse. Este estudio evaluó las percepciones de los profesionales de la salud sobre el uso de esta herramienta en cuidados paliativos, así como los principales dilemas éticos y las ganancias o pérdidas derivadas de su uso. Se realizó una entrevista semidirigida a nueve profesionales, y los datos se sometieron a un análisis de contenido. Surgieron cinco categorías, que apuntan a una buena acogida del recurso, pues garantiza el ejercicio de la autonomía del paciente, reforzando la percepción de los cuidados, facilitando las decisiones y proporcionándole confort psicológico. Por otro lado, las adversidades o desafíos involucraron la necesidad de mejor preparación técnica y mayor integración del equipo, la sobrecarga profesional, la inseguridad jurídica sobre el posible uso del documento, la finitud como tabú y el desconocimiento de la sociedad sobre el tema.

Diretivas antecipadas de vontade: instrumento de autonomia para pacientes oncológicos / Advance directives: autonomy tool for cancer patients / Directivas anticipadas: un instrumento de autonomía para los pacientes oncológicos

Resumo Diretivas antecipadas de vontade permitem que pacientes designem um representante legal e manifestem seus desejos a serem cumpridos quando se tornarem incapazes de se comunicar. Neste estudo, objetivou-se avaliar o conhecimento e as preferências de pacientes oncológicos sobre essas diretivas. Trata-se de pesquisa quantitativa e transversal realizada por meio do preenchimento de dois modelos de diretivas antecipadas de vontade e da aplicação de um questionário. Constatou-se que 87,38% dos pacientes nunca tinham ouvido falar em tais diretivas, 97,2% desconheciam os modelos e 95% não referiram dificuldade de preenchimento. Após o esclarecimento, 93,46% consideraram importante que todas as pessoas elaborem as diretivas, 94,86% que elas sejam disponibilizadas aos pacientes e 91,12% que seja aprovada uma lei federal. O esclarecimento sobre o conceito de diretivas antecipadas de vontade contribuiu para aumentar o interesse de pacientes oncológicos pela utilização desse direito, que fortalece sua autonomia pessoal quando incapazes de se comunicar.

Abstract Advance directives allow patients to assign a legal representative and express their wishes to be fulfilled when they can no longer communicate. This study evaluated cancer patients' knowledge and preferences regarding these directives. A cross-sectional quantitative research was conducted by filling out two advance directive models and a questionnaire. Of the total sample, 87.38% had never heard of such document, 97.2% ignored the two models available and 95% had no difficulties filling it out. After clarifications, 93.46% considered it important for all patients to write a directive, 94.86% expressed that advance directives should be made available to patients and 91.12% argued that a federal law should be passed. Explaining the concept of advanced directives increased the interest of cancer patients in exercising this right which strengthen their autonomy.

Resumen Las directivas anticipadas permiten a los pacientes designar a un representante legal y manifestar sus decisiones cuando no puedan comunicarse. Este estudio evaluó el conocimiento y las preferencias de los pacientes oncológicos sobre este documento. Se realizó una investigación cuantitativa y transversal, mediante la respuesta a dos modelos de directivas anticipadas y la aplicación de un cuestionario. El 87,38% de los pacientes no conocían este documento, el 97,2% de ellos desconocían los modelos y el 95% declararon no tener dificultades para responderlos. Tras la aclaración, el 93,46% de los entrevistados consideraban importante que todos elaboraran el documento, el 94,86% que debían ponerlo a disposición de los pacientes y el 91,12% que se aprobara una ley federal. La aclaración del concepto de voluntades anticipadas contribuye a incrementar el interés de los pacientes oncológicos por hacer uso de este derecho, que refuerza su autonomía personal cuando ya no pueden comunicarse.

Advance directives and cancer: oncology practices in Brazil / Directivas anticipadas y cáncer: prácticas oncológicas en Brasil / Diretivas antecipadas e câncer: práticas oncológicas no Brasil

Abstract Data on advance directives in Brazil are lacking. This study aims to assess the understanding of oncologists regarding advance directives and the frequency with which they discuss advance directives and advance care planning with their patients in Brazil. This is an observational, descriptive and cross-sectional study, conducted with cclinical oncologists associated with the Brazilian Society of Clinical Oncology. Participants were invited to answer a questionnaire prepared by the authors. In total, 72 physicians answered the questionnaire, of which 73% were under 45 years old and 56% worked in oncology for less than 10 years. Regarding the limits of intervention and end-of-life care during treatment, 54.2% of respondents reported not discussing it. Although 67% of oncologists know the term advance directives, they do not develop them with their patients and 57.2% do not perform advance care planning. Most oncologists in this study do not set advance care planning and advance directives for most patients.

Resumen Dada la escasa información sobre directivas anticipadas en Brasil, este estudio analiza si los oncólogos conocen las directivas anticipadas y si discuten el tema con sus pacientes o realizan la planificación anticipada de atención. Este es un estudio observacional, descriptivo y transversal, realizado con oncólogos clínicos afiliados a la Sociedad Brasileña de Oncología Clínica. Se aplicó un cuestionario elaborado por los autores. Participaron 72 médicos; el 73% tenían menos de 45 años y el 56% llevaban trabajando menos de diez años en oncología. Respecto a los límites de la intervención y los cuidados al final de la vida durante el tratamiento, el 54,2% de los participantes no trataban del tema. Aunque el 67% de ellos están familiarizados con el término, no lo comentan con sus pacientes, y el 57,2% no realizan una planificación anticipada de atención. La mayoría de los oncólogos no hacen la planificación anticipada de atención ni las directivas anticipadas.

Resumo Considerando a escassez de informações sobre diretivas antecipadas no Brasil, este estudo investiga a compreensão de oncologistas quanto a diretivas antecipadas e a frequência com que discutem sobre diretivas antecipadas e planejamento antecipado de cuidados com seus pacientes. Um estudo observacional, descritivo e transversal foi conduzido com oncologistas clínicos afiliados à Sociedade Brasileira de Oncologia Clínica. Os participantes foram convidados a responder a um questionário preparado pelos autores. No total, 72 médicos responderam ao questionário, dos quais 73% tinham menos de 45 anos de idade e 56% trabalhavam em oncologia há menos de 10 anos. Com relação aos limites de intervenção e cuidados de fim de vida durante o tratamento, 54,2% dos entrevistados relataram não discutir o assunto. Embora 67% dos oncologistas conheçam o termo diretivas antecipadas, eles não as discutem com seus pacientes e 57,2% não realizam planejamento antecipado de cuidados. A maioria dos oncologistas deste estudo não estabelece planejamento de cuidados antecipados e diretivas antecipadas para a maioria dos pacientes.

Advantage and progress of model-induced drug development in traditional Chinese medicine / 中国药房

Model-induced drug development （MIDD） is a mathematical and statistical method for constructing， validating and utilizing disease model， drug exposure-response model and pharmaceutical model to promote drug development. With the development of pharmaceutical technology， MIDD is widely used in the field of traditional Chinese medicine and has high practical value. This article summarizes the relevant literature at home and abroad， and finds that MIDD has the advantages of improving the research and development efficiency of traditional Chinese medicine， quickly identifying the applicable population of traditional Chinese medicine， predicting the interaction of drugs， and optimizing the dosage. MIDD has been applied in the studies of effective components of traditional Chinese medicine， quantitative design of prescription， dosage form and preparation process， pilot scale- up， quality and safety， regulatory decision-making and evaluation， etc.

Nurses′ experience and reality dilemma in advance care planning:a qualitative meta-synthesis / 中国实用护理杂志

Objective:To systematically evaluate and integrate the qualitative research of the practical experience and practical difficulties of advance care planning (ACP), so as to provide a reference for subsequent clinical nurses to better carry out ACP.Methods:PubMed, Web of Science, Embase, Cochrane Library, CINAHL, CNKI, Wanfang, VIP, Chinese Biomedical Literature Database were collected the qualitative research on the practical experience and practical difficulties of nurses′advance care planing, and the search time was the database establishment until August 1, 2022. Literature quality evaluation was conducted by the Joanna Briggs Institute (JBI) (2016), and the results were summarized using Meta integration method.Results:A total of 13 studies were included, and 39 studies were summarized into 11 new categories, forming 4 integrated results: nurses′ cognition of ACP practice, emotional experience of nurses′ ACP practice, personal factors that hinder ACP practice, and external environmental factors that hinder ACP practice.Conclusions:In ACP practice, nurses should be actively guided to have positive cognitive and emotional experience to improve their competence in ACP practice. At the same time, government departments should be united to support, integrate hospitals, society and other forces to formulate coping strategies against obstacles, so as to promote the development and practice of ACP.

Effect of decision aid tools for advance care planning in patients with cancer: a Meta-analysis / 中国实用护理杂志

Objective:To systematically evaluate the effect of decision aid tools for advance care planning (ACP) in patients with cancer.Methods:Randomized controlled trials about the effect of decision aid tools for ACP in patients with cancer were retrieved from Embase, PubMed, CINAHL, the Cochrane Library, PsycINFO, Chinese Biomedical Literature Database, VIP, China National Knowledge Internet and Wanfang Data. The retrieval time was from inception to February 23, 2022. Literature screening, quality evaluation and data consolidation were carried out independently by two researchers. Then, RevMan 5.3 software was used for Meta analysis.Results:A total of 13 researches were included, involving 2 151 cancer patients. Meta-analysis showed that the signing of advance directives ( OR=1.81, 95% CI 1.22-2.69, Z=2.95, P<0.01) and knowledge scores related to ACP( MD=0.58, 95% CI 0.35-0.81, Z=4.90, P<0.01) in experimental group was higher than that in control group, but receiving cardiopulmonary resuscitation treatment before death ( MD=0.33, 95% CI 0.21-0.53, Z=4.64, P<0.01) and the level of decision confliction ( MD=-3.69, 95% CI-6.43--0.95, Z=2.64, P<0.01) in experimental group was lower than those in control group, and the differences were statistically significant. Conclusions:Existing evidence shows that decision aid tools can improve cancer patients′ awareness of ACP, help patients to join in ACP discussions and sign advanced directives, reduce patients' preference for cardiopulmonary resuscitation treatment before death and reduce decision-making conflicts.

Exploration and advance of key techniques in MALDI mass spectrometry imaging / 药学学报

Matrix-assisted laser desorption/ionization mass spectrometry imaging (MALDI-MSI) is a new imaging technique with label-free, rapid, and high throughput features. It has bloomed in the analysis on the spatial distribution of biomolecules such as drugs, metabolites, peptides and proteins on the tissue surface in virtue of providing high data throughput from non-targeted full analysis and high accuracy from targeted analysis. The acquisition of MSI signal response with high sensitivity, high spatial resolution, and good stability is directly depended on the appropriate sample preparation approaches, and flexible and various data processing tools will help the non-target data mining to meet the demands of visualization, spatial distribution and multiple index applications so as to reveal the scientific rules beneath the data. This review briefly summarizes the key advances in MALDI-MSI from aspects of sample preparation procedures, data processing and visualization. It also illustrates the characteristics, difficulties and probable solutions derived from these key techniques.

Recent advances on pharmacological effect and safety of Ampelopsis grossedentata / 中国药房

Ampelopsis grossedentata as a traditional medicinal plant， has many pharmacological effects. Pharmacological effects and possible mechanisms are summarized in this paper based on the research progress of A. grossedentata at home and abroad in recent years， involving digestive system （treating liver injury and improving intestinal flora imbalance）， endocrine system （treating hyperglycemia， hyperlipidemia and hyperuricemia）， cardiovascular system （treating hypertension， vascular injury， myocardial ischemia-reperfusion injury and myocardial hypertrophy）， immune system （anti-inflammatory and anti-tumor） and nervous system （adjuvant treatment for chronic degenerative diseases）. By summarizing the animal acute toxicity test， long-term toxicity test and cell test results of A. grossedentata in the literature， it is confirmed that its safety is good.

Advances in Allogeneic Chimeric Antigen Receptor T Cells / 中国医学科学院学报

Autologous chimeric antigen receptor(CAR)T-cell therapy has improved the prognosis of hematological malignancies.Nevertheless,allogeneic CAR-T cells have potential advantages over the autologous approach available on the market.However,allogeneic CAR-T cells may cause life-threatening graft-versus-host disease(GVHD)or be rapidly eliminated by the host immune system.In this review,we analyze the different sources of T cells for optimal allogeneic CAR-T cell therapy,describe the different approaches,and introduce the gene editing measures to produce allogeneic CAR-T cells with limited potential for GVHD and improved anti-tumor effect.

Behavioral Intention Scale for End-of-life DiscussionsReliability and Validity Using a Web-based Survey

Purpose: The purpose of this study was to examine the reliability and validity of the behavioral intention scale for end-of-life discussions. Methods: The scale items were developed according to the Theory of Planned Behavior. The drafts of the scale were created by Item-Level Content Validity Index (I-CVI) and a preliminary test. In the main study, we administered a cross-sectional questionnaire on the web to the participants 20–79 years of age (n=860), living in Tokyo and six surrounding prefectures, and a retest one week later (n=665). We examined item analysis, calculation of a reliability coefficient (intraclass correlation coefficient, Cronbach's alpha coefficient), construct validity, and concurrent validity of the scale. Results: Six factors identified by an exploratory factor analysis were; outcome evaluation, perceived power, control beliefs, motivation to comply, normative beliefs, and behavioral beliefs. The alpha coefficient of the overall scale was .96. The effect size that was determined based on known-groups validity and the correlation coefficient determined on the basis of concurrent validity were moderate. Conclusions: The reliability and validity of the scale were generally confirmed.