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.

Voluntades Anticipadas y Planificación Anticipada de Cuidados en personas con demencia

La prevalencia de personas con demencias ha aumentado progresivamente y actualmente constituye un desafío en salud pública. Además de fortalecer las herramientas necesarias para su diagnóstico y tratamiento, es necesario desarrollar estrategias que promuevan el respeto de quienes la padecen y mejorar su participación social. El deterioro cognitivo interfiere progresivamente en la toma de decisiones, especialmente en la etapa final de la enfermedad, generando conflictos en torno al respeto por la autonomía y la atención clínica. Las Voluntades Anticipadas y la Planificación Anticipada de Cuidados ofrece la oportunidad de reflexionar sobre valores, deseos y preferencias de atención a futuro, así como la posibilidad de comunicarlos a familiares y equipos de atención, promoviendo el respeto por la autonomía y disminuyendo los conflictos asociados a la atención, especialmente en la etapa terminal. En Chile se ha avanzado progresivamente, pero aun es un desafío implementar las estrategias para consolidar este proceso, superando las barreras existentes y potenciando sus beneficios.

The prevalence of people with dementia has progressively increased and currently constitutes a public health challenge. In addition, to strengthening the necessary tools for diagnosis and treatment, it is essential to develop strategies that promote respect for those who suffer from it and improve their social participation. Cognitive impairment progressively interferes with decision-making, especially in the final stages of the disease, generating conflicts regarding autonomy and clinical care. Advance Directives and Advance Care Planning offer the opportunity to reflect on values, desires, and future care preferences, as well as the possibility to communicate them to family members and care teams, promoting respect for autonomy and reducing conflicts associated with care, especially in the terminal stage. In Chile, there has been gradual progress, but it is still a challenge to implement the strategies to consolidate this process, overcoming existing barriers and maximizing its benefits.

Summary of evidence to facilitate the implementation of advance care planning among advanced cancer patients / 中南大学学报(医学版)

Advance care planning(ACP)is designed to ensure that patients lacking autonomous decision-making capacity receive medical services in accordance with their expectations and preferences.Individuals with advanced cancer are a crucial target for ACP implementation.However,the current practice of ACP in this group in China is suboptimal,demanding high-quality implementation evidence to strengthen ACP in the clinical practice of patients with advanced cancer.The existing literature can be summarized into 27 pieces of evidence across 7 dimensions,including initiation time,intervention content,intervention providers,intervention modalities,communication skills,outcome indicators,and environmental support.The aforementioned evidence could provide crucial support for improving ACP implementation for patients with advanced cancer.Subsequent research efforts should integrate patient preferences and explore the most suitable implementation strategies for ACP in the Chinese population with advanced cancer,considering diverse aspects such as traditional culture,ACP education and training,legislative support,and healthcare system refinement.

A review of the scope of barriers factor to the implementation of advance care planning for critically ill and end-life patients in China / 中国实用护理杂志

Objective:To explore the barrier factors in the implementation of advance care planning for critically ill and end-life patients in China. Provide reference for the implementation of advance care planning in critically ill and end-life patients in China.Methods:The literature from CNKI, Chinese Biomedical Literature Database, Wanfang database, VIP, PubMed and Web of Science database on the implementation of advance care planning for critically ill and end-life patients in China were searched. The search deadline was from database establishment to January 15, 2023. To analyze the literature meeting the inclusion and exclusion criteria.Results:A total of 18 literatures were included, and the barrier factors to the implementation of advance care planning for critically ill and end-life patients in China included six categories (27 types): social and cultural factors (4 types), patient factors (4 types), family factors (5 types), medical staff factors (8 types), interpersonal interaction factors (4 types), policy and legal factors (2 types).Conclusions:The implementation of advance care planning for critically ill and end-life patients in China is affected by a variety of barrier factors. The improvement measures should be formulated according to the modifiable barrier factors to promote the implementation of advance medical care plan for critically ill and end-life patients in China.

Difficulties Faced by Physicians Working at a Designated Cancer Hospital in Practice of Advance Care Planning (ACP)

Objectives: There are known barriers to advance care planning practices for both health care providers and patients. Since physicians were the main occupations that introduce ACP, the goal of this study was to clarify where the difficulties were felt in the practice of ACP by looking back on the practice of physicians who were working in a designated cancer hospital. Methods: Semi-structured interviews were conducted with 10 physicians who were recommended by the palliative care team as physicians who clinically practice ACP for cancer patients. Interviews were transcribed verbatim, coded, and analyzed using content analysis by Graneheim et al. Results: We finally classified into 6 major categories as follows: Insufficient readiness of patients/Insufficient readiness of medical staff/Discrepancy in communication/Lack of evaluation index of ACP/Dilemma with professional ethics. Conclusion: Patients and health care providers each lacked readiness for ACP, and physicians found it difficult due to the resulting communication discrepancies and lack of colleagues with whom they could collaborate.

Experiences of Advance Care Planning in Epileptic Patients with Intellectual Disability

Introduction: Epileptic patients have a higher risk of death than healthy individuals. Advance care planning (ACP) is also important for epileptic patients, but is not well recognized. We experienced two cases in which ACP was performed by family and medical staff for epileptic patients with intellectual disability. Case1: The patient was a 29-year-old male. It was important to continue spending his daily life as he currently did. Although his family wanted to provide palliative care at the end of life, there were no decisions about which medical interventions may not work at his end of life. It was decided that the family and medical staff would continue to make shared decision making. Case2: The patient was an 18-year-old female. It was important to continue spending her daily life as she currently did. Her family and medical team decided to provide palliative care at the end of life. Based on the opinions of the family members in both cases, the importance and widespread use of ACP in epileptic patients were obtained. Conclusions: ACP enabled families and medical staff to make shared decisions about what is best for epileptic patients with intellectual disability. ACP for epileptic patients seems to need to be promoted.

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.

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

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.

Advance Care Planning by Rehabilitation Professionals: an Experience with a Patient with Nonmalignant Respiratory Disease

We herein report a case of a 76-year-old male patient with chronic obstructive pulmonary disease whose advance care planning (ACP) was facilited by rehabilitation staff by utilizing dialogue in rehabilitation settings, mainly in the context of conditioning and self-management during pulmonary rehabilitation. When a rehabilitation professional is involved in ACP, it is easy to be involved in the so-called ACP in the broad sense. Compared to other professions, rehabilitation professionals have more time being with a patient for dialogue and can discuss the patient's values and future concerns from a life-centered perspective. To promote ACP in the practical settings, rehabilitation professionals, who have the advantage of having more time for dialogue than other professions, need to be involved in ACP by taking advantage of repeated opportunities for dialogue.

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.

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.

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.

Construction of Sustained Social Support System for Advance Care Plan / 中国医学伦理学

With the aggravation of global aging process and the strengthening of patients’ awareness of rights, the realization of the elderly and end-of-life patients’ right to know and autonomy, and the satisfaction of physical and mental needs have become new indicators to measure social development. Advance care plan focuses on the discussion process of patients, their families and medical staff on end-of-life medical decisions and death intentions, which greatly promotes the development concept of palliative care and optimal death. To promote this process in the context of traditional Chinese culture, it is also necessary to combine with the local family concept and collectivism. Therefore, this paper introduced a sustainable social support system involving multiple subjects such as families, communities, social workers, and legal workers, with a view to benefiting the elderly and end-of-life patients.

Progress in the Application of Various Theoretical Models in Advance Care Planning / 中国医学伦理学

Advance care planning (ACP) is an important part of hospice care, a core index of high-quality palliative care, and one of the effective indicators for improving the life quality of end-of-life patients. By reviewing the progress of various theoretical models and their applications in ACP, including planned behavior theory, behavioral change wheel theory, self-determination theory, prospect theory, change theory, and cultural suitability theory, this paper delved into the advantages and limitations of each theoretical model and analyzed its research prospects in future ACP clinical practice to promote researchers’ correct understanding of the role of different theoretical models in various types of studies, with a view to providing new ideas for clinical research on ACP.

Application Status and Research Progress of Palliative Care in Patients with End-stage Renal Disease / 中国医学伦理学

End-stage renal disease is the final stage of chronic kidney disease, and research on palliative care for end-stage renal disease patients in China is still in its infancy. The research content of palliative care for end-stage renal disease at home and abroad mainly includes identification and management of symptoms, advance care planning, psychosocial and spiritual support, and ethical issues in dialysis decision-making. However, practical experience is still insufficient. By focusing on the overview, development status, patient needs, as well as implementation forms and models of palliative care for endstage renal disease patients, this paper summarized the research progress and application status of related research, with a view to providing references for future domestic research and clinical practice in this field.

Referral Patterns of Outpatient Palliative Care among the Head and Neck Cancer Population

Abstract Introduction Patients with head and neck cancer (HNC) experience unique physical and psychosocial challenges that impact their health and quality of life. Early implementation of palliative care has been shown to improve various health care outcomes. Objective The aim of the present study was to evaluate the patterns of referral of patients with HNC to outpatient palliative care as they relate to utilization of resources and end-of-life discussions. Methods We performed a retrospective review of 245 patients with HNC referred to outpatient palliative care services at two Louisiana tertiary care centers from June 1, 2014, to October 1, 2019. The control group consisted of those that were referred but did not follow-up. Reasons for referral were obtained, and outcome measures such as emergency department (ED) visits, hospital readmissions, and advance care planning (ACP) documentation were assessed according to predictive variables. Results There were 177 patients in the treatment group and 68 in the control group. Patients were more likely to follow up to outpatient palliative care services if referred for pain management. Hospital system, prior inpatient palliative care, and number of outpatient visits were associated with an increased likelihood for ED visits and hospital readmissions. Those in the palliative care treatment group were also more likely to have ACP discussions. Conclusion Early implementation of outpatient palliative care among patients with HNC can initiate ACP discussions. However, there are discrepancies in referral reasons to palliative care and continued existing barriers to its effective utilization.

Planejamento antecipado de cuidados: guia prático / Advance care planning: a practical guide / Planificación anticipada de atención: una guía práctica

Resumo O planejamento antecipado de cuidados é um processo de discussões entre profissionais de saúde e pacientes que permite a tomada de decisão compartilhada quanto a objetivos de cuidados de saúde, atuais e/ou futuros, com base nos desejos e valores do paciente e em questões técnicas do cuidado. É considerado fundamental na prestação de cuidados de excelência em fim de vida, permitindo que profissionais de saúde alinhem os cuidados prestados com o que é mais importante para o paciente. Apesar de seus benefícios, ainda é muito pouco realizado na prática clínica, especialmente no Brasil. Considerando a necessidade de guias práticos de planejamento antecipado de cuidados adaptados à realidade brasileira, pautados em estratégias de comunicação empática, este estudo é uma proposta de guia baseada em revisão integrativa da literatura (PubMed e SciELO), com recomendações de evidências atuais, incluindo instrumentos validados para o português (Brasil), para facilitar sua implementação na prática clínica.

Abstract Advance care planning is a process of discussion between healthcare professionals and patients that enables shared decision-making on current and/or future healthcare goals, based on patients' desires and values and technical care issues. Advance care is considered essential in the provision of quality terminal care, allowing healthcare professionals to align the care provided with what is most important to the patient. Despite its benefits, it is still underused in clinical practice, especially in Brazil. Considering the need for practical guides for advance care planning adapted to the Brazilian reality, drawing on empathetic communication strategies, this study is a guide proposal based on an integrative literature review (PubMed and SciELO), with recommendations of current evidence, including instruments validated for Portuguese (Brazil), to facilitate its implementation in clinical practice.

Resumen La planificación anticipada de atención es un proceso de discusión entre los profesionales de la salud y los pacientes que permite la toma de decisiones relacionadas a los objetivos de atención médica actuales y/o futuros, basadas en los deseos y valores del paciente y en cuestiones técnicas de la atención. Resulta ser una apropiada atención terminal, ya que estos profesionales pueden adecuar la atención con los deseos del paciente. Pese a sus beneficios, es poco realizada en la práctica clínica, especialmente en Brasil. Dada la necesidad de guías prácticas para la planificación anticipada de atención, adaptadas a la realidad brasileña y basadas en estrategias comunicativas empáticas, este estudio propone una guía a partir de una revisión integradora de la literatura (PubMed y SciELO), con recomendaciones de evidencia actual, incluidos instrumentos validados para el portugués brasileño para facilitar su aplicación en la práctica clínica.

Continue with ICU care – she is a spiritual being

This case study discusses a dispute between the healthcare team and the patient’s surrogate decision maker at a cancer centre. While the healthcare team deemed further care to be futile, the patient’s husband argued that they should continue to try to reverse his wife’s acute decline. This case study illustrates the inertia and moral distress that can result when there are differences between patients/surrogates and the healthcare team in their goals for intensive care. The issues of moral distress and an inability to make decisions were addressed by involving an ethics consultant, and by creating institutional mechanisms to address end-of-life issues at an earlier stage

Planificación avanzada del cuidado y adecuación del esfuerzo terapéutico en pediatría: fundamento y procedimiento / Advanced care planning and adequacy of therapeutic effort in pediatrics: rationale and procedures / Planejamento avançado do cuidado e adequação do esforço terapêutico na pediatria: base e procedimento

Las mejoras en la calidad de vida de la población y los avances de la medicina han contribuido al aumento de la sobrevida de niños y adolescentes, así como también un aumento progresivo de niños con enfermedades o condiciones de salud crónicas, complejas, dependientes de dispositivos médicos y/o tecnología, que conviven con la posibilidad de complicaciones que amenazan sus vidas. Esta situación implica múltiples desafíos en los procesos de toma de decisiones respecto a la pertinencia y proporcionalidad de medidas diagnósticas, terapéuticas y de monitorización, considerando el beneficio real y/o la carga de sufrimiento, que las mismas pueden determinar en la calidad de vida del niño y su familia. En los últimos años, en el marco de la atención sanitaria, se han incorporado los conceptos y procedimientos de planificación avanzada del cuidado (PAC) y limitación o adecuación del esfuerzo terapéutico (AET) que se presentan. El objetivo de este documento es describir las definiciones básicas de conceptos necesarios para comprender e implementar procesos de PAC y AET, el marco bioético y legal para dichos procesos, el procedimiento para la implementación de la definición de directivas de adecuación del esfuerzo terapéutico (DAET), elaborado por la Unidad de Cuidados Paliativos Pediátricos del Centro Hospitalario Pereira Rossell.

Improvements in the populations's quality of life and medical progress have contributed to the increase of survival rates of children and adolescents, as well as to a progressive rise in children with chronic, complex diseases or health conditions, dependent on medical devices and / or technology, who live with the possibility of life-threatening complications. This situation brings multiple challenges in the decision-making processes regarding the relevance and proportionality of diagnostic, therapeutic and monitoring measures, considering the real benefit and / or the burden that they can cause in the quality of life of the child and his family. In recent years, within the framework of health care, the concepts and procedures of advanced care planning and limitation or adequacy of therapeutic effort (ATE) have been incorporated. The aim of this paper is to describe the basic definitions needed to understand and implement ATE processes, the bioethical and legal framework for such processes, the procedure for the implementation of the definition of Directives for the Adequacy of Therapeutic Effort (DATE), prepared by the Pediatric Palliative Care Unit of the Pereira Rossell Hospital Center.

Melhoras na qualidade de vida da população e avanços na medicina têm contribuído para o aumento da sobrevida de crianças e adolescentes, bem como um aumento progressivo de crianças com doenças crônicas, complexas ou condições de saúde dependentes de dispositivos médicos e/ou tecnologia, que convivem com a possibilidade de complicações que ameaçam suas vidas. Essa situação traz consigo múltiplos desafios nos processos decisórios quanto à relevância e proporcionalidade das medidas diagnósticas, terapêuticas e de monitoramento, considerando o real benefício e/ou a carga de sofrimento, que podem determinar na qualidade de vida da criança e de sua família. Nos últimos anos, no âmbito da atenção à saúde, foram incorporados os conceitos e procedimentos de: planejamento avançado da atenção e limitação o adequação do esforço terapêutico (AET). O objetivo deste documento é descrever: as definições básicas de conceitos necessários para à compreensão e implementação dos processos da PAC e AET, do marco bioético e legal para tais processos, do procedimento para a implementação da definição de diretrizes para a adequação do esforço terapêutico (DAET) elaborado pela Unidade de Cuidados Paliativos Pediátricos do Centro Hospitalar Pereira Rossell.