Decisiones en reanimación y cuidados de fin de vida en neonatos. Aspectos bioéticos (parte II) / Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part II)

La manera de enfrentar la muerte de un recién nacido requiere formación y reflexiones sobre el proceso de toma de decisiones de fin de vida, la comunicación con la familia y los cuidados que se proveerán. El objetivo de este artículo es profundizar aspectos salientes de bioética neonatal aplicados a situaciones de fin de vida en recién nacidos. En la primera parte, se exponen nociones de futilidad terapéutica, criterios de adecuación de cuidados, derechos de pacientes y de su familia, y conceptos acerca del valor de la vida. En la segunda parte, se analizan las situaciones que ameritan la consideración de adecuación de cuidados y se profundizan aspectos de la comunicación y el complejo proceso de toma de decisiones de fin de vida en recién nacidos.

Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.

Decisiones en reanimación y cuidados de fin de vida en neonatos. Aspectos bioéticos (parte I) / Decisions concerning resuscitation and end-of-life care in neonates. Bioethical aspects (Part I)

La manera de enfrentar la muerte de un recién nacido requiere formación y reflexiones sobre el proceso de toma de decisiones de fin de vida, la comunicación con la familia y los cuidados que se proveerán. El objetivo de este artículo es profundizar aspectos salientes de bioética neonatal aplicadas a situaciones de fin de vida en recién nacidos. En la primera parte, se exponen nociones de futilidad terapéutica, criterios de adecuación de cuidados, derechos de pacientes y de su familia, y conceptos acerca del valor de la vida. En la segunda parte, se analizan las situaciones que ameritan la consideración de adecuación de cuidados y se profundizan aspectos de la comunicación y el complejo proceso de toma de decisiones de fin de vida en recién nacidos.

Coping with the death of a newborn infant requires training and reflection regarding the end-of-life decision-making process, communication with the family, and the care to be provided. The objective of this article is to analyze in depth the salient aspects of neonatal bioethics applied to end-of-life situations in newborn infants. Part I describes notions of therapeutic futility, redirection of care criteria, patient and family rights, and concepts about the value of life. Part II analyzes situations that deserve considering the redirection of care and delves into aspects of communication and the complex process of end-of-life decision-making in newborn infants.

Pulsatile varicose veins: an uncommon presentation of a common condition / Varizes pulsáteis: uma apresentação incomum de uma condição comum

Abstract Varicose veins of the lower limbs are common. However, pulsatile varicose veins are unusual. They could be an indicator of a sinister underlying pathology, such as severe cardiac dysfunction. It is easy to miss these rare cases during clinical workup, which can result in futile treatment with potentially dangerous consequences. In this report, we describe 2 cases of pulsatile varicose veins that highlight different etiologies and management strategies for this condition.

Resumo Varizes dos membros inferiores são comuns. Entretanto, varizes pulsáteis são raras, podendo ser indicadoras de uma patologia subjacente sombria como disfunção cardíaca grave. É fácil deixar passar esses casos raros durante exames clínicos, o que pode resultar em tratamento fútil com consequências potencialmente perigosas. Neste relato, descrevemos dois casos de varizes pulsáteis que evidenciam as diferentes etiologias e estratégias de manejo para essa condição.

Obstinación terapéutica y su límite con la ética: ¿cuándo detenerse? / Therapeutic effort limit, when do we stop?

Obstinacy or therapeutic cruelty is a medical practice based on the application of extraordinary and disproportionate methods of life support in terminally ill or irrecoverable patients. It is not without risks and can cause physical, psychological and social damage, which is why this practice is not ethically acceptable. It violates the four principles of bioethics: non-maleficence, beneficence, justice and autonomy. The reasons that lead to therapeutic obstinacy are: 1) lack of a definitive diagnosis; 2) false expectation of improvement of the patient; 3) disagreement (between doctors and family or between doctors themselves) with respect the patient's situation; 4) difficulty in communicating with the patient and his/her family; 5) compliance with unrealistic or futile treatments; 6) cultural or spiritual barriers and 7) medical-legal aspects. Limitation of therapeutic effort (LTE) is a deliberate or thoughtful decision about the non-implementation or withdrawal of therapeutic measures that will not provide significant benefit to the patient. But, refusing a treatment, must not imply the artificial acceleration of the death process. Chile does not contemplate euthanasia or assisted suicide in its legislation. Criteria used to justify the limitation of the therapeutic effort are: 1) futility of the treatment (futility); 2) declared wishes of the patient; 3) quality of life and 4) economic cost. The Healthcare Ethics Committee of the Hospital de Urgencia Asistencia Pública has prepared a LET Clinical Guide, proposing a decision-making flow chart that takes in account the autonomy of the patient, the opinion of the medical team, patient and family. In case of disagreement, the Healthcare Ethics Committee's may be requested to issue a pronouncement.

La obstinación o ensañamiento terapéutico es una práctica médica basada en la aplicación de métodos extraordinarios y desproporcionados de soporte vital en enfermos terminales o irrecuperables. No está exenta de riesgos y puede producir daño físico, psicológico y social, motivo por el cual no es aceptable desde el punto de vista ético. Viola los cuatro principios de la bioética: no maleficencia, beneficencia, justicia y autonomía. Las razones que conducen a la obstinación terapéutica son: 1) la falta de un diagnóstico definitivo; 2) la falsa expectativa en el mejoramiento del paciente; 3) el desacuerdo (entre médicos y familia o entre los médicos mismos) con la situación del paciente; 4) la dificultad para comunicarse con el paciente y con la familia; 5) la conformidad con tratamientos poco realistas o fútiles; 6) barreras culturales o espirituales y 7) aspectos médico legales. La limitación del esfuerzo terapéutico (LET) es una decisión deliberada o meditada sobre la no implementación o la retirada de medidas terapéuticas que no aportarán un beneficio significativo al paciente. Pero, rechazar un tratamiento no puede implicar la aceleración artificial del proceso de la muerte. Chile no contempla en su legislación la eutanasia ni el suicidio asistido. Criterios utilizados para justificar o no, la limitación del esfuerzo terapéutico: 1) la inutilidad del tratamiento (futilidad); 2) los deseos expresos del paciente; 3) la calidad de vida y 4) el costo económico. El Comité de Ética Asistencial del Hospital de Urgencia Asistencia Pública, ha elaborado una Guía Clínica de LET. Propone un flujograma de toma de decisiones que considera la autonomía del paciente, la postura tanto del equipo médico, del paciente y su familia y en caso de no acuerdo, del comité de Ética Asistencial.

Supervivencia de cirugía de rescate en carcinoma escamoso de orofaringe / Survival outcomes of salvage surgery in oropharyngeal squamous cell carcinoma

La recurrencia de carcinoma de células escamosas orofaríngeo (CCEOF) se asocia a mal pronóstico, particularmente en recurrencias en etapa avanzada. La cirugía en el contexto de rescate es más complicada por el tratamiento oncológico del tumor primario, por lo tanto, tiene un mayor riesgo de complicaciones y estadía hospitalaria. Sin embargo, la cirugía de rescate es la mejor oportunidad del paciente como tratamiento curativo y para supervivencia a largo plazo. La población de pacientes que reciben tratamiento para CCEOF ha cambiado en la última década, se ha reconocido que la incidencia de virus papiloma humano (VPH) asociado a CCEOF ha generado el gran aumento de CCEOF y el cambio asociado en las características de la población de pacientes, ahora los pacientes son más jóvenes y tienen menos comorbilidades. Con el aumento exponencial en la incidencia de CCEOF, la necesidad de cirugía de rescate en CCEOF podría verse en aumento. En vista del aumento de la incidencia de casos con carcinoma escamoso de orofaringe y su importante relación con el VPH, esta revisión se enfoca en la supervivencia tras cirugía de rescate con intención curativa y evaluar si con los avances en su tratamiento ha mejorado su pronóstico.

Recurrence of oropharyngeal squamous cell carcinoma (OPSCC) is associated with poor prognosis, particularly in advanced stage recurrences. Salvage surgery is complicated by previous oncological treatment of the primary tumor, therefore, it has a higher risk of complications and hospital stay. However, salvage surgery is the patient's best opportunity as a curative treatment and for long-term survival. The population of patients receiving treatment for OPSCC has changed in the last decade, it has been recognized that the incidence of human papilloma virus (HPV) associated OPSCC has generated an increase of OPSCC and changes in the epidemiology of the patient population, with younger patients and with less comorbidities. With the exponential increase in the incidence of OPSCC, the need for salvage surgery in OPSCC could increase in the future. In view of the increase in the incidence of cases with squamous oropharyngeal carcinoma and its relationship with HPV, this review focuses on survival after salvage surgery with curative intent and assessing whether the progress in its treatment has improved its prognosis.

Futilidad en cirugía: el caso de la gastrostomía / Futility in surgery: the case of the gastrostomy

Introducción. La nutrición se ha considerado tradicionalmente una necesidad básica y el garantizarla se ha asumido como una responsabilidad médica. Se cuestiona la utilización de procedimientos que permitan la nutrición artificial en situaciones clínicas limítrofes, en las cuales su beneficio puede ser limitado o nulo. En el presente estudio se busca determinar el éxito de un procedimiento quirúrgico, la gastrostomía, desde la perspectiva del beneficio para el paciente y, así, aproximarse a una definición de gastrostomía fútil. Métodos. Se llevó a cabo un estudio observacional, retrospectivo y analítico, basado en la revisión de las historias clínicas de los pacientes sometidos a gastrostomía abierta o endoscópica en el Hospital Universitario San Ignacio. El grupo de investigadores principales analizaron los datos para determinar si las gastrostomías practicadas fueron fútiles o no lo fueron. Resultados. Se incluyeron 145 pacientes tratados durante el periodo del 2015 al 2018 y en el 53 % de los cuales se cumplieron los criterios para considerar el procedimiento como fútil. Los procedimientos ­108 endoscópicos y 37 abiertos­fueron practicados principalmente en pacientes con neoplasias de cabeza y cuello, y enfermedades neurológicas. Si bien no hubo mortalidad asociada con el procedimiento, 26 de los pacientes fallecieron en los primeros 15 días después de la intervención. Discusión. El determinar en qué condiciones se debe considerar la gastrostomía una intervención realmente beneficiosa es un desafío. Es necesario incorporar un análisis ético, antes de ofrecer este procedimiento, con el fin de minimizar las gastrostomías innecesarias que actualmente constituyen un problema global

Introduction. Nutrition has traditionally been considered a basic need and ensuring it has been assumed as a medical responsibility. The use of procedures that allow artificial nutrition in borderline clinical situations is questioned, in which their benefit may be limited or null. The present study seeks to determine the success of a surgical procedure, gastrostomy, from the perspective of benefit to the patient and, thus, to approximate a definition of futile gastrostomy. Methods. An observational, retrospective and analytical study was carried out, based on the review of the medical records of patients undergoing open or endoscopic gastrostomy at the Hospital Universitario San Ignacio. The group of main researchers analyzed data to determine if the gastrostomies performed were futile or not.Results. Results. A total of 145 patients treated during the period from 2015 to 2018 were included, and 53% of whom met the criteria to consider the procedure as futile. The procedures - 108 endoscopic and 37 open - were practiced mainly in patients with head and neck malignancies, and neurological diseases. Although there was no mortality associated with the procedure, 26 of the patients died in the first 15 days after the intervention.Discussion. Determining under what conditions a gastrostomy should be considered a truly beneficial intervention is challenging. It is necessary to incorporate an ethical analysis, before offering this procedure, in order to minimize unnecessary gastrostomies that currently constitute a global problem

Ethical and legal consideration on medical realities and ethical debates about withholding or withdrawing treatment in end-of-life care

It is natural for all human beings to die; hence, death is an inevitable event. However, advances in medical technology are changing the meaning of natural death. These advanced treatments provide the capability to intervene at the time of death and to reshape the circumstances around natural death, by sustaining human life. However, it is extremely difficult to judge when treatment is futile for the patient's best interests. It is therefore recommended to make time to discuss the concept of medical futility during the course of caring for a critically ill patient. Despite the expectations and efforts of the patient, the patient's family, and medical staff, the patient will eventually, have a ‘hopeless’ medical condition. Most discussions about decision-making in end-of-life treatment have neen ethical debates focused on the patient's self-determination and best interest in the context of concepts such as euthanasia or death with dignity. However, such discussions are insufficient for resolving the wide variety of circumstances that occur in clinical settings. Instead, the various ethical dilemmas inherent to end-of-life care should be approached by educating medical teams, patients, and their families about how to recognize medical futility. Furthermore, it is important to optimize the balance between the rights of patients and the responsibility of physicians.

Considerações médicas, éticas e jurídicas sobre decisões de fim de vida em pacientes pediátricos / Medical, ethical and legal considerations regarding end-of-life decisions in pediatric patients / Consideraciones médicas, éticas y jurídicas sobre decisiones de fin de la vida en pacientes pediátricos

Resumo A partir do caso do bebê Charlie Gard, discutem-se aspectos relativos à tomada de decisão médica em pediatria, sobretudo em relação a pacientes portadores de doenças incuráveis e terminais. Foram considerados princípios bioéticos e do cuidado paliativo, além de questões jurídicas relacionadas a autoridade parental e obstinação terapêutica, sob a perspectiva do ordenamento jurídico brasileiro. O processo de tomada de decisões referentes a cuidado de fim de vida em pediatria deve contemplar compartilhamento de responsabilidades entre equipe de saúde e pais, com a participação da criança sempre que possível, buscando o princípio do melhor interesse. Deve-se evitar a judicialização de questões médicas, situação associada a desgaste e sofrimento de todas as partes envolvidas. Conclui-se que a tomada de decisão de final de vida em pediatria deve se pautar na busca do direito a viver com dignidade, mas, sobretudo, de mantê-la até o fim.

Abstract To discuss, in the case of the baby Charlie Gard, aspects to be considered in medical decision making in pediatrics, especially in patients with incurable and terminal diseases. Bioethical principles and Palliative Care were considered, as well as legal issues related to parental authority and therapeutic obstinacy, from the perspective of the Brazilian legal system. Decisions related to end-of-life care in pediatrics should be a process of sharing responsibilities between the health team and parents, with the participation of the child whenever possible, seeking the principle of the best interest. Judicialization of medical issues must be avoided, as it is associated with attrition and suffering for all parties involved. End-of-life decision-making in pediatrics should be based on the search for the right to live with dignity, but, above all, to maintain it until the end of life.

Resumen A partir del caso del bebé Charlie Gard, se discuten aspectos relativos a la toma de decisiones médicas en pediatría, sobre todo en pacientes portadores de enfermedades incurables y terminales. Se consideraron los principios bioéticos y de los cuidados paliativos, además de las cuestiones jurídicas relacionadas con la autoridad parental y la obstinación terapéutica, desde la perspectiva del ordenamiento jurídico brasileño. El proceso de toma de decisiones referidas a los cuidados en el fin de la vida en pediatría debe contemplar responsabilidades compartidas entre el equipo de salud y los padres, con la participación del niño siempre que sea posible, buscando el principio del mejor interés. Se debe evitar la judicialización de cuestiones médicas, situación asociada a desgaste y sufrimiento para todas las partes involucradas. Se concluye que la toma de decisión de final de vida en pediatría debe guiarse por la búsqueda del derecho a vivir con dignidad, pero, sobre todo, de mantenerla hasta el final de la vida.

Hemodialysis as a life-sustaining treatment at the end of life

The Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life came into effect on February 4th, 2018, in South Korea. Based on the Act, all Koreans over the age of 19 years can decide whether to refuse life-sustaining treatments at the end of life via advance directive or physician orders. Hemodialysis is one of the options designated in the Act as a life-sustaining treatment that can be withheld or withdrawn near death. However, hemodialysis has unique features. So, it is not easy to determine the best candidates for withholding/withdrawing hemodialysis at the end of life. Thus, it is necessary to investigate the meaning and implications of hemodialysis at the end of life with ethical consideration of futility and withholding or withdrawal of intervention.

Futilidad médica y obstinación familiar en terapia intensiva: ¿Hasta cuándo seguir y cuándo parar? / Medical futility and family obstinacy in intensive therapy. When to stop and when to keep going?

En las últimas décadas han aparecido múltiples publicaciones sobre obstinación terapéutica y futilidad en la Unidad de Terapia Intensiva. Sin embargo, poco se ha publicado sobre la "obstinación familiar" en continuar con medidas invasivas en pacientes graves, a pesar de una adecuada información sobre su muy mal pronóstico a corto plazo. En determinadas ocasiones, estos pacientes críticos no están en condiciones de tomar decisiones sobre los tratamientos propuestos y lamentablemente muchos de ellos no han dejado testimonio previo sobre sus preferencias en cuanto hasta dónde avanzar en medidas invasivas (directivas anticipadas). De esta manera, son los familiares quienes quedan a cargo de estas decisiones, que pueden no coincidir con lo que el paciente hubiera deseado. Con la medicina paliativa se ha generado una invalorable ayuda a la difícil tarea de la comunicación entre el médico, el paciente y la familia. Los límites de las intervenciones pueden ser difíciles e imprecisos, generando múltiples problemas en la toma de decisiones. En determinadas ocasiones, a pesar de una adecuada información de los médicos intensivistas y paliativistas, algunos familiares no aceptan las directivas de no avanzar con medidas invasivas. Comprender la justificación de la futilidad puede ser relevante para resolver disputas de la forma más adecuada. Este trabajo propone discutir el tema de la futilidad en Terapia Intensiva y cómo encarar el problema tan poco abordado de la "obstinación familiar" ante situaciones potencialmente irrecuperables, pese a una adecuada información médica.

There have been several recent publications related to therapeutic obstinacy and futility in the Intensive Care Unit. However, little has been published about "the family obstinacy" in persisting with invasive measures in seriously ill patients, despite the appropriate information provided to them about the patient's poor short-term prognosis. On certain occasions, these critical patients are unable to make decisions on the proposed treatments and, unfortunately, many of them have not previously indicated their preferences in terms of limits to invasive measures (advanced directives). Thus, the patient's relatives are the ones who finally assume this arduous task and, in several occasions, they make decisions that do not correspond with the patient's actual wishes. Palliative medicine is of invaluable help in the difficult goal of improving communication among doctors, patients and patients relatives. Limits to intervention can be difficult and vague, generating multiple problems in the decision-making process. On certain occasions and despite adequate information provided by therapists and palliative care doctors, patients' relatives do not accept professional directives indicating to stop invasive interventions. Understanding futility justification may be relevant to the appropriate resolution of these disputes. In this article, we intend to discuss the subject "futility in Intensive Care Unit" and how to face the seldom addressed "family obstinacy" issue in potentially unrecoverable situations, despite adequate medical information.

Palliative extubation: case analysis in an intensive care unit / Extubação paliativa: análise de casos em uma unidade de terapia intensiva

Current technological advancements have allowed for the prolongation of the dying process, especially in IntensiveCare Units (ICU). This has increased the need for decisions on the limitation of therapeutic effort (LTE), such as the useof palliative extubation that, although difficult from an emotional standpoint, has legal and ethical justifications, and hasincreased family acceptance. The objective was to evaluate the clinical and demographical profile of patients submittedto palliative extubation (PT) in the ICU of the University Hospital of the Universidade Federal de Santa Catarina (HU/UFSC), Brazil. This was a historical cohort whose data were obtained from forms filled out by critical care doctors fromthe Hospital Death Commission at the HU/UFSC. Patients submitted to LTE that died between January 2011 andDecember 2014 were included in the study. The use of PT and clinical and epidemiological data were collected. LTEwas indicated in 374 (53.8%) patients, with 23 (6.1%) receiving PT. Average age of patients undergoing PT was 73.8years; 10 patients were over 60, and 9 were over 80 years of age. Ten (43.4%) patients had been previously in the ICU.The average time from checking in at the ICU and extubation was 4.4 days, and between extubation and death it was2.5 days. Neurological disease was the main cause of death of patients subjected to PT. All family members were awareof the extubation. Family members from 2 families witnessed the extubation. Morphine was the most common analgesicprescribed. It is concluded that patients submitted to PT were older, with neurological diseases, and the average timefrom extubation to death was 2.5 days

O desenvolvimento tecnológico do mundo atual tem permitido o prolongamento do morrer, principalmente em unidadesde terapia intensiva (UTI). Torna-se crescente a necessidade de decisões de limite de esforço terapêutico (LET), do qualse destaca a extubação paliativa (EP), que embora difícil de ser aceita do ponto de vista emocional, tem respaldo éticolegale aumenta a satisfação familiar. O estudo teve como objetivo avaliar o perfil clínico-demográfico dos pacientesextubados paliativamente (ExPl) na UTI do HU/UFSC. Trata-se de coorte histórico, cujos dados foram coletados atravésdas fichas preenchidas por médicos intensivistas que constituem a Comissão de Óbito da instituição. Foram incluídosos pacientes que morreram na UTI/HU/UFSC, após indicação de LET, entre janeiro/2011 e dezembro/2014. Foramselecionados os pacientes que foram ExPl, sendo anotados seus dados clínicos e epidemiológicos. LET foi apontado em374 (53,8%) pacientes, sendo 23 (6,1%) ExPl. A média da idade dos ExPl foi de 73,8 anos, 10 tinham mais de 60 e 9 maisde 80 anos. Dez (43,4%) pacientes já haviam sido internados previamente em UTI. O tempo médio entre a internaçãoextubaçãofoi 4,4 dias e entre extubação-morte foi de 2,5 dias. Doença neurológica foi a principal causa da morte dospacientes ExPl. Todos os familiares estavam cientes da EP. Familiares de 2 pacientes acompanharam a EP. Morfina foia medicação analgésica mais prescrita. Concluiu-se que os pacientes que foram ExPl eram mais idosos, acometidospreferencialmente por doenças neurológicas e o tempo médio entre a EP e óbito foi de 2,5 dias

CRIANÇAS COM MÚLTIPLAS MALFORMAÇÕES CONGÊNITAS: QUAIS SÃO OS LIMITES ENTRE OBSTINAÇÃO TERAPÊUTICA E TRATAMENTO DE BENEFÍCIO DUVIDOSO? / CHILDREN WITH MULTIPLE CONGENITAL DEFECTS: WHAT ARE THE LIMITS BETWEEN THERAPEUTIC OBSTINACY AND THE TREATMENT OF UNCERTAIN BENEFIT?

RESUMO Objetivo: A abordagem terapêutica de crianças com múltiplas malformações inclui muitos dilemas, tornando difícil diferenciar um tratamento de benefício duvidoso da obstinação terapêutica. O objetivo deste artigo foi destacar as possíveis fontes de incerteza no processo de tomada de decisão para esse grupo de crianças. Descrição do caso: Lactente de 11 meses de idade, que nasceu com múltiplas malformações congênitas e foi abandonado por seus pais, nunca recebeu alta hospitalar. Ele tem cardiopatia congênita cianótica, estenose do brônquio fonte esquerdo e imperfuração anal. Passou por muitos procedimentos cirúrgicos e permanece sob suporte tecnológico. A correção total do defeito cardíaco parece improvável, e todas as tentativas de desmame do ventilador falharam. Comentários: As duas principais fontes de incerteza no processo de tomada de decisão para crianças com múltiplos defeitos congênitos estão relacionadas ao prognóstico incerto. Dados empíricos escassos são por conta das múltiplas possibilidades de envolvimento (anatômico ou funcional) de órgãos, com poucos casos semelhantes descritos na literatura. O prognóstico é também imprevisível para a evolução da capacidade cognitiva e para o desenvolvimento de outros órgãos. Outra fonte de incertezas é como qualificar uma vida como valendo a pena ser vivida, ponderando custos e benefícios. A quarta fonte de incerteza é quem tem a decisão: os médicos ou os pais? Finalmente, se um tratamento é definido como fútil, então, como limitar o suporte? Na ausência de um método universal para essa tomada de decisão, ficamos com a responsabilidade dos médicos em desenvolver suas habilidades de percepção das necessidades dos pacientes e dos valores familiares.

ABSTRACT Objective: Therapeutic approach of children with multiple malformations poses many dilemmas, making it difficult to build a line between the treatment of uncertain benefit and therapeutic obstinacy. The aim of this paper was to highlight possible sources of uncertainty in the decision-making process, for this group of children. Case description: An 11-month-old boy, born with multiple birth defects and abandoned by his parents, has never been discharged home. He has complex congenital heart disease, main left bronchus stenosis and imperforate anus. He is under technological support and has gone through many surgical procedures. The complete correction of the cardiac defect seems unlikely, and every attempt to wean the ventilator has failed. Comments: The first two main sources of uncertainty in the management of children with multiple birth defects are related to an uncertain prognosis. There is a lack of empirical data, due to the multiple possibilities of anatomic or functional organ involvement, with few similar cases described. Prognosis is also unpredictable for neuro-developmental evolution, as well as the capacity for the development and regeneration of other organs. Another source of uncertainty is how to qualify the present and future life as worth living, by weighing the costs and benefits. The fourth source of uncertainty is who has the decision: physicians or parents? Finally, if a treatment is defined futile then, how to limit support? No single framework exists to help these delicate decision-making processes. We propose, then, that physicians should be committed to develop their own perception skills in order to understand patient’s manifestations of needs and family values.

PET Imaging-Based Phenotyping as a Predictive Biomarker of Response to Tyrosine Kinase Inhibitor Therapy in Non-small Cell Lung Cancer: Are We There Yet? / 대한핵의학회잡지

The increased understanding of the molecular pathology of different malignancies, especially lung cancer, has directed investigational efforts to center on the identification of different molecular targets and on the development of targeted therapies against these targets. A good representative is the epidermal growth factor receptor (EGFR); a major driver of non-small cell lung cancer tumorigenesis. Today, tumor growth inhibition is possible after treating lung tumors expressing somatic mutations of the EGFR gene with tyrosine kinase inhibitors (TKI). This opened the doors to biomarker-directed precision or personalized treatments for lung cancer patients. The success of these targeted anticancer therapies depends in part on being able to identify biomarkers and their patho-molecular make-up in order to select patients that could respond to specific therapeutic agents. While the identification of reliable biomarkers is crucial to predict response to treatment before it begins, it is also essential to be able to monitor treatment early during therapy to avoid the toxicity and morbidity of futile treatment in non-responding patients. In this context, we share our perspective on the role of PET imagingbased phenotyping in the personalized care of lung cancer patients to non-invasively direct and monitor the treatment efficacy of TKIs in clinical practice.

Ordem de não reanimar pacientes em fase terminal sob a perspectiva de médicos / Terminally ill patients' do not resuscitate orders from the doctors' perspective / La orden de no reanimar a los pacientes en fase terminal bajo la perspectiva de los médicos

Ordem de não reanimar consiste na manifestação expressa da recusa de reanimação cardiopulmonar por paciente com doença avançada em progressão. Objetivou-se descrever a atitude dos médicos em relação à ordem de não reanimar e à necessidade de sua normatização. Foi aplicado questionário a 80 médicos inscritos na delegacia do Conselho Regional de Medicina de Joaçaba/SC, Brasil. Verificou-se que 90% dos participantes conheciam o significado dessa ordem, 86,2% concordavam em acatá-la, 91,2% consideravam importante seu registro em prontuário e 92,5% consideravam oportuna a emissão de normatização a respeito. Concluiu-se que a maioria dos médicos tinha conhecimento sobre Ordem de Não Reanimar, concordava em respeitá-la, valorizava seu registro em prontuário e desejava a normatização por parte dos órgãos competentes.

The do-not-resuscitate order is the explicit statement by patients with advanced disease in progression refusing cardiopulmonary resuscitation. This study aimed to describe the attitude of physicians in relation to the this order and the need for its regulation. A questionnaire was applied to 80 physicians in the medical bureau of the Regional Council of Medicine of Joacaba/SC, Brazil. It was found that 90% of the respondents knew the meaning of do-not-resuscitate, 86.2% agreed to respect it, 91.2% considered it important to be registered in medical records and 92.5% understood as opportune the issuance of a regulation in this regard. It was concluded that most doctors knew about the do-not-resuscitate order, agreed to respect it, valued its registration in medical records and wanted its regulation by the relevant bodies.

La orden de no reanimar es la manifestación expresa de rechazo de la reanimación cardiopulmonar por parte de pacientes portadores de una enfermedad avanzada en progresión. Este estudio tuvo como objetivo describir la actitud de los médicos con respecto a esta orden y la necesidad de su regulación. Se aplicó un cuestionario a 80 médicos (50% del total) inscriptos en el distrito del Consejo Regional de Medicina de Joaçaba, Santa Catarina, Brasil. Se encontró que el 90% de los encuestados conocían el significado de esta orden, el 86,2% estaban de acuerdo en cumplirla, el 91,2% consideraban importante el registro en el historial médico y el 92,5% juzgaban oportuna la existencia de una regulación al respecto. Se concluyó que la mayoría de los médicos tenía conocimiento de la orden de no reanimar, estaba de acuerdo en respetarla, valoraba su registro en el historial médico y deseaba su regulación por parte de las instituciones competentes.

Limitação terapêutica para crianças portadoras de malformações cerebrais graves / Therapeutic limitation for children with severe brain malformations / Limitación terapéutica para niños con malformaciones cerebrales graves

As malformações cerebrais congênitas podem se apresentar de forma leve ou grave, podendo ser letais mesmo poucas horas após o nascimento. A partir de levantamento bibliográfico sistemático, verificou-se que, embora em tese sejam eticamente semelhantes suspender e renunciar a tratamento, tal equivalência não é percebida na prática por médicos e enfermeiros assistentes, nem pela população em geral, que tende a aceitar mais confortavelmente a renúncia que a suspensão de tratamentos. O diálogo com os pais é o procedimento que legitima a iniciativa médica de propor limitação terapêutica. Em conclusão, as malformações cerebrais graves resultam em contexto de terminalidade de vida, em que limitação ao suporte respiratório é o principal conflito enfrentado e ao qual se aplicam princípios bioéticos dos cuidados paliativos.

Brain malformations may present themselves in different forms, from mild to severe, which can be lethal within a few hours after birth. Based on a systematic review of literature, it was verified that, although theoretically suspending or withholding treatment are ethically similar, in practice, such equivalence is not perceived either by doctors and nursing assistants or by the general population, who tend to more comfortably accept the withholding rather than the withdrawal of treatments. The dialogue with parents is the procedure that legitimizes medical initiatives when proposing therapeutic limitation. In conclusion, severe brain malformations result in an end of life context, in which bioethical principles of palliative care apply and in which the limitation of respiratory support is the main dilemma to be faced in the final moments of patients' lives.

Las malformaciones cerebrales congénitas pueden presentarse desde formas leves hasta formas graves, pueden ser letales pocas horas después del nacimiento. A partir de una revisión bibliográfica sistemática se verificó que, aunque teóricamente suspender o reiniciar un tratamiento es éticamente semejante, esta equivalencia no es percibida en la práctica ni por los médicos y enfermeros asistentes, ni por la población en general, que tiende a aceptar más cómodamente la renuncia que la suspensión de los tratamientos. El diálogo con los padres constituye el procedimiento que legitima la iniciativa médica de proponer la limitación terapéutica. En conclusión, las malformaciones cerebrales graves dan lugar a un contexto de terminalidad de la vida, en el cual se aplican los principios bioéticos de los cuidados paliativos, y en el que la limitación del soporte respiratorio es el principal conflicto que se enfrenta en los momentos finales de la vida del paciente.

Vida e morte na UTI: a ética no fio da navalha / Life and death in the ICU: ethics on the razor’s edge / Vida y muerte en la UCI: la ética en el filo de la navaja

Este artigo busca abordar algumas questões éticas vivenciadas nas fronteiras de vida e morte, nas unidades de terapia intensiva (UTI). Esses são locais especiais no âmbito hospitalar onde é obrigatória a presença de tecnologia médica de última geração, para preservar e sustentar a vida de pacientes em estado grave ou em risco. É nesse contexto complexo que emergem difíceis questões éticas: ausência critérios objetivos para internações em UTI; superlotação das UTI, com pacientes sem indicação; até as dificuldades de limitar a terapêutica, que se transforma em práticas distanásicas. Analisamos um caso de suicídio assistido, da jovem estadunidense Brittany Maynard, bem como a necessidade de cuidados paliativos, o dever ético de cuidar da dor e sofrimento humanos, a valorização do paradigma do cuidar para além do curar e a polêmica questão da ortotanásia, em busca de um final de vida sem dor ou sofrimento, mas em paz e com dignidade.

This article seeks to address some ethical issues experienced on the borders of life and death in Intensive Care Units (ICUs). These are special places in hospitals, where there is the mandatory presence of cutting-edge medical technology and support for the preservation of life of a patient in a critical condition or risk. It is in this complex context that difficult ethical issues emerge: there are no objective criteria for admissions to the ICU, ICUs can be overcrowded with patients without diagnosis and there are difficulties in limiting treatment, which results in medical procedures that only prolong the dying process of the patient. We analyzed a case of assisted suicide, the young American Brittany Maynard, the need for Palliative Care, the ethical duty to care for pain and human suffering, the need to rediscover the paradigm of care, in search of an end to life without pain and suffering, and to avoid the practice of “medical futility”, which only prolongs the dying process and only imposes more suffering on the patient, family members and health care professionals.

Este artículo intenta abordar algunas cuestiones éticas vivenciadas en las fronteras entre la vida y la muerte en las Unidades de Cuidados Intensivos (UCI). Estos son lugares especiales en los hospitales, donde existe una presencia obligatoria de tecnología médica de vanguardia, para preservar y mantener la vida de un paciente en estado grave o en riesgo. Es en este contexto complejo que surgen cuestiones éticas difíciles: ausencia de criterios objetivos para la admisión en la UCI; condiciones de hacinamiento de pacientes sin indicación; dificultades para limitar los tratamientos que se convierten en prácticas distanásicas. Se analizaron: un caso de suicidio asistido, de la joven estadounidense Brittany Maynard; la necesidad de cuidados paliativos; el deber ético de cuidar del dolor y del sufrimiento humano; la recuperación del paradigma de la atención más allá de la cura y la controvertida cuestión de la ortotanasia, que apunta al fin de la vida sin dolor ni sufrimiento, pero en paz y con dignidad.