[The Death of Children: Ethical dilemmas about the limitation of therapeutic effort]. / La muerte de los niños. Debates éticos en torno a la limitación del esfuerzo terapéutico.

Ethical dilemmas take importance in current medical practice, especially at the end of life. Limitation of therapeutic effort, understood as not starting or withdrawing life support measures, is an alternative to preserve patient dignity when death approaches. Ethical dilemmas in this context have been widely studied in adults; not in children, in which the big psychological tension experienced by parents and professionals makes difficult to take accepted and consensual ethical decisions. The objective of this work has been to understand the concept of limitation of therapeutic effort and the deontological principles that support them in the pediatric field. The purpose was none other than to establish improvements in dying children whom peculiar life-end makes necessary a different approach of adults and an ethical conceptual clarification which justify LET practice in youngers.

Death with dignity: Are we providing adequate palliative care to cancer patients?

Fortunately, we live in the era of evidence-based medicine. The progress that we had in the treatment of cancer and the decrease of futile and unnecessary procedures previously performed is undeniable. Nowadays, although, it seems that we are tending to the other extreme: trying to justify not performing procedures or invasive treatments in the name of the 'Death with Dignity'.

El concepto de muerte natural hoy, entre la futilidad y la necesidad ética. Un concepto para el siglo xxi / The concept of natural death today, between futility and ethical necessity. A concept for the 21st century

El concepto de muerte natural ha estado presente en la reflexión filosófica, médica y social desde hacesiglos, cumpliendo una doble función: comprender la finitud humana y esperar un modo deseable de al-canzar el final de nuestros días. Hoy, esos objetivos han quedado desdibujados por la sensación de controlsobre la muerte que da la alta tecnificación de la medicina, los sueños de inmortalidad alimentados por losmedios y la confusa línea trazada entre la autonomía y la dignidad. En este artículo se estudia el conceptode muerte natural que en el pasado siglo XX fue objeto de debate entre sanitarios y bioeticistas y quehoy cobra un especial protagonismo. La “naturalidad” de la muerte pretendía ser una suerte de fronteraética frente a cualquier forma de violencia, injusticia, tecnificación excesiva o intromisión de la voluntadhumana. Hoy, muchos de esos aspectos quedan desdibujados en un contexto tan poco natural como es elhospitalario. Además, también el ámbito forense ha encontrado serias dificultades para excluir cualquierintervención humana, voluntaria o involuntaria en buena parte de las muertes, puesto que poco hay ya denatural en aquello que respiramos, comemos o bebemos. A partir de todo ello, se ofrece una propuesta deredefinición que responda a una doble necesidad: la necesidad social de integrar la inevitable mortalidad yla necesidad personal compartida de llegar al final tras un proceso humanizador que excluya toda respon-sabilidad humana. Es la muerte natural antropológicamente posible y éticamente deseable.(AU)

The concept of natural death has been present in philosophical, medical and social reflection for cen-turies, fulfilling a double function: understanding human finitude and hoping for a desirable way to reachthe end of our days. Today, those goals have been blurred by the sense of control over death that comesfrom the high technology of medicine, the dreams of immortality nurtured by the media, and the confu-sing line drawn between autonomy and dignity. This article studies the concept of natural death that inthe past 20th century was the subject of debate between health workers and bioethicists and that at thebeginning of this 21st century has already begun to be questioned. The “naturalness” of death was inten-ded to be a kind of ethical frontier in the face of any form of violence, injustice, excessive technicalizationor interference with the human will. Today, many of these aspects are blurred in a context as unnatural as the hospital one. In addition, the forensic field has also encountered serious difficulties in excluding anyhuman, voluntary or involuntary intervention, in a large part of the deaths, since there is little naturalin what we breathe, eat or drink. Based on all this, a redefinition proposal is offered that responds to adouble need: the social need to integrate the inevitable mortality and the shared personal need to reachthe end after a humanizing process that excludes all human responsibility. It is anthropologically possibleand ethically desirable natural death.(AU)

Empatía y soledad en el contexto de las profesiones sanitarias: artículo de revisión / Empathy and loneliness in the context of healthcare professions: a scoping review

Las habilidades sociales y de comunicación juegan un papel importante en la relación que establecenlos profesionales sanitarios con sus pacientes. En este ámbito, soledad y empatía clínica es previsible quejueguen un papel importante de influencia. Sin embargo, el conocimiento que existe sobre dicho papelaún es bastante limitado. Esta revisión se hizo con el propósito de recoger los hallazgos reportados enesta materia en estudiantes y profesionales de la salud. La revisión incluyó: artículos publicados en ingléso castellano durante los últimos cincuenta años que estuvieran indexados en MedLine o SCOPUS, con estu-diantes o profesionales sanitarios como participantes, y donde empatía y soledad hubieran sido utilizadascomo medidas principales. Once artículos, publicados entre 1986 y el 2020, cumplieron los criterios antesindicados y fueron incluidos en el análisis. De ellos, ocho fueron estudios observacionales y tres estudiosde intervención. Ocho estudios se realizaron con estudiantes y tres con profesionales sanitarios. Una co-rrelación negativa entre empatía y soledad apareció en cuatro estudios. Además, la soledad en el entornofamiliar fue descrita como predictor negativo de la empatía hacia los pacientes. Los programas formativosen habilidades empáticas y de acompañamiento grupal de los estudiantes demostraron no solo ser eficacesen la mejora de la empatía, sino también en la reducción de la soledad. Estos hallazgos confirman unaestrecha relación entre empatía y soledad. También demuestran que la mejora en habilidades empáticastiene un efecto positivo en la conducta ética profesional hacia los pacientes y en la mejora del estado debienestar medido en una menor percepción de soledad.(AU)

Social and communication skills play an important role in the relationship between healthcare profes-sionals and their patients. In this field, it is plausible that clinical empathy and loneliness play an importantrole of influence. However, the knowledge about this roll is still scarce. The main purpose of this reviewwas to collect findings reported on this matter in students and healthcare professionals. The review in-cluded: articles published in English or Spanish during the last fifty years that were indexed in MedLineor SCOPUS, with students or health professionals as participants, and where empathy and loneliness hadbeen used as main measures. Eleven articles, published between 1986 and 2020, that met the abovemen-tioned criteria were included in the analysis. From them, eight corresponded to observational studies andthree to interventional studies. Eight studies included students and the other three included healthcareprofessionals in their study samples. A negative correlation between empathy and loneliness was foundin four studies. Furthermore, loneliness in the family environment was described as a negative predictorof empathy towards patients. Training programs in empathic skills and group accompaniment proved notonly effective in the improvement of empathy in students, but also in the reduction of loneliness. Thesefindings confirm a close relationship between clinical empathy and loneliness. They also show that theimprovement in empathic skills not only has a positive effect on the professional ethical behavior towardspatients, but it also helps improving the professional’s well-being by reducing loneliness.(AU)

Advance Directives: Knowledge of the Topic Among Psychiatrists.

Objective: Advance directives are becoming increasingly important as health technologies evolve. We sought to assess psychiatrists' knowledge of advance directives, as this knowledge is fundamental to the implementation and drafting of these personal documents. Methods: A previously published questionnaire that evaluated the knowledge of medical professors was used. The sample, composed of psychiatrists from Rio de Janeiro, Brazil, originated from a publicly available list. During the search process, the COVID-19 pandemic affected Brazil and the rest of the world, which influenced our methodology and results. Results: A total of 40 psychiatrists participated in the study. The results obtained, although not significant, suggested that psychiatrists with an increased time of practice had more knowledge of advance directives. Nevertheless, less than half of the participants had knowledge about this topic. Conclusion: The number of psychiatrists surveyed indicates the need for further studies on the subject. The influence of the COVID-19 pandemic on this study led to findings such as a change in sensitivity when addressing the topic and greater difficulty in contacting professionals.

The Motion of the Italian National Bioethics Committee on Aggressive Treatment towards Children with Limited Life Expectancy.

The motion of the Italian National Bioethics Committee entitled "Aggressive treatment or therapeutic obstinacy on young children with limited life expectancy" comprises a premise that rejects therapeutic obstinacy and makes 12 recommendations. Recommendation no. 1 states the general rules: it ascribes a cardinal role to a shared care plan, it supports pain management therapy and pain relief, it opposes ineffective and disproportionate clinical treatment and defensive medicine. The other recommendations are correlated to the enacting of a national law establishing clinical ethics committees in paediatric hospitals; participation of parents and their fiduciaries in the decision-making processes; recourse to courts only as extrema ratio in the event of irremediable disagreement between the medical team and the family members; accompaniment at the end of life also through continuous deep sedation combined with pain therapy; access to palliative care; the need to reinforce research on pain and suffering in children; clinical trials and research studies conducted in children; the training of doctors, healthcare personnel and psychologists, to support parents in emotional and practical terms; the facilitation of the closeness of parents to children in extremely precarious clinical conditions; the relevant role of the associations of parents of sick children. Comments are made, in particular, about the innovative recommendations respectively relating to the adoption of care planning, the establishment, by law, of clinical ethics committees in paediatric hospitals and the limitation of recourse to courts-only as extrema ratio-in the event of irremediable disagreement between the medical team and the family members.

Nursing strategies to reduce the risk of therapeutic obstinacy in artificial nutrition.

BACKGROUND: Nurses have an important role in maintaining a patient's nutrition near the end of life. AIMS: To define nursing nutrition strategies with the person near the end of life and their families; systematise the elements to be considered in artificial nutrition decision-making and evaluate the nursing interventions' influence on therapeutic obstinacy risk. METHODS: A sample of 11 articles were selected and the results considered strategies to promote oral feeding before artificial nutrition; the follow-up of the health-disease process by nurses and described the nurse's role as a privileged patient advocate in the defence of the ethical principles of decision-making. These principles consider symptomatology, prognosis, psychology and the emotional significance of nutrition. CONCLUSION: Nurses are qualified professionals with a critical role in the patient's care due to the proximity they have with the patient; the evidence seems to show a relationship between nursing interventions and the reduction of the risk of therapeutic obstinacy; however, there are no studies in this specific area.

Encuesta en población abierta respecto a términos relacionados con decisiones al final de la vida.

INTRODUCTION: Concepts related to end-of-life decisions, such as euthanasia, palliative care, advance directives and therapeutic obstinacy, are poorly understood by the general population, which, when facing a terminal situation, is not prepared to choose the best option. OBJECTIVE: Pilot study (n = 544) to find out what the open population understands about terms used in end-of-life situations in four cities of the Mexican Republic. METHOD: Survey via Internet with 18 questions about different terms. It was a descriptive, cross-sectional study. Statistical analysis was carried out. RESULTS: People older than 18 years who were not engaged in health-related professional activities were selected. CONCLUSIONS: Most terms related to end-of-life decisions were found not to be interesting to or understood by a part of the population. The least recognized term was therapeutic obstinacy (62.8%), and the most widely known, palliative care (91%); there was confusion between the terms euthanasia and assisted suicide (47.8%). Age and education level had more influence in the results, than other demographic variables.

INTRODUCCIÓN: Conceptos relacionados con las decisiones que se toman al final de la vida, como eutanasia, cuidados paliativos, voluntad anticipada y obstinación terapéutica son poco comprendidos por la población en general, que en el momento de enfrentar una situación terminal no está preparada para elegir la mejor opción. OBJETIVO: Estudio piloto (n = 544) para conocer lo que la población abierta entiende acerca de términos utilizados al final de la vida en cuatro ciudades de la república mexicana. MÉTODO: Encuesta vía internet de 18 preguntas sobre los distintos términos. Se trató de un estudio descriptivo, transversal, con análisis estadístico. RESULTADOS: Se eligieron personas mayores de 18 años que no trabajaran en profesiones relacionadas con la salud. CONCLUSIONES: La mayoría de los términos del final de la vida no interesaron ni fueron entendidos por parte de la población. El término menos reconocido fue la obstinación terapéutica (62.8 %) y el más conocido, cuidados paliativos (91 %); se confunden los términos eutanasia y suicidio asistido (47.8 %). La edad y escolaridad resultaron de mayor influencia en los resultados, que las otras variables demográficas.

Encuesta en población abierta respecto a términos relacionados con decisiones al final de la vida / Open population survey regarding terms related to decisions at the end of life

Resumen Introducción: Conceptos relacionados con las decisiones que se toman al final de la vida, como eutanasia, cuidados paliativos, voluntad anticipada y obstinación terapéutica son poco comprendidos por la población en general, que en el momento de enfrentar una situación terminal no está preparada para elegir la mejor opción. Objetivo: Estudio piloto (n = 544) para conocer lo que la población abierta entiende acerca de términos utilizados al final de la vida en cuatro ciudades de la república mexicana. Método: Encuesta vía internet de 18 preguntas sobre los distintos términos. Se trató de un estudio descriptivo, transversal, con análisis estadístico. Resultados: Se eligieron personas mayores de 18 años que no trabajaran en profesiones relacionadas con la salud. Conclusiones: La mayoría de los términos del final de la vida no interesaron ni fueron entendidos por parte de la población. El término menos reconocido fue la obstinación terapéutica (62.8 %) y el más conocido, cuidados paliativos (91 %); se confunden los términos eutanasia y suicidio asistido (47.8 %). La edad y escolaridad resultaron de mayor influencia en los resultados, que las otras variables demográficas.

Abstract Introduction: Concepts related to end-of-life decisions, such as euthanasia, palliative care, advance directives and therapeutic obstinacy, are poorly understood by the general population, which, when facing a terminal situation, is not prepared to choose the best option. Objective: Pilot study (n = 544) to find out what the open population understands about terms used in end-of-life situations in four cities of the Mexican Republic. Method: Survey via Internet with 18 questions about different terms. It was a descriptive, cross-sectional study. Statistical analysis was carried out. Results: People older than 18 years who were not engaged in health-related professional activities were selected. Conclusions: Most terms related to end-of-life decisions were found not to be interesting to or understood by a part of the population. The least recognized term was therapeutic obstinacy (62.8%), and the most widely known, palliative care (91%); there was confusion between the terms euthanasia and assisted suicide (47.8%). Age and education level had more influence in the results, than other demographic variables.

[Palliative care in maternity units]. / Les soins palliatifs en maternité.

Over recent years, palliative care in maternity units has developed considerably. This is due to the evolution of legislation, medicine and requests from many parents, faced with a fatal prenatal diagnosis, to continue with the pregnancy and support their baby at birth. In parallel, the neonatal intensive care of extremely premature babies has improved significantly. Different situations can be concerned by the setting up of palliative care in maternity units. This specific support comprises significant challenges.

Unreasonable obstinacy: Ethical, deontological and forensic medical problems.

Especially in oncology and in critical care, the provision of medical care can require therapeutic choices that could go beyond the patient's will or intentions of the protection of his health, with the possible adoption of medical behaviors interpreted as unreasonable obstinacy or, at the opposite extreme, as euthanasia. In some cases, the demand for obstinate therapeutic services could come from the patient or from his relatives, in which case the dilemma arises for the health professional between rejecting such a request, in respect of their professional autonomy, or abiding by it for fear of a professional care responsibility for therapeutic abandonment. We analyzed and commented on emblematic clinical cases brought to court for alleged wrong medical conduct due to breach of the prohibition of unreasonable obstinacy. In healthcare it is impossible to fix a general rule defining any therapeutic act as appropriate, because on one hand there are technical assessments of medical competence, and on the other the perception of the patient and of his family members of the usefulness of the health care provided, which may be in contrast. The medical act cannot make treatments that are inappropriate for the needs of care or even be unreasonable; conversely, before the request by the patient or by his family members for disproportionate health services in relation to the results they may give in practice, in compliance with the legislative and deontological provisions, the doctor can refuse them, thus safeguarding both his decision-making autonomy and, therefore, his professional dignity.

Concepções de enfermeiras sobre o prolongamento artificial da vida / Nurses’ view on artificial extension of life / Concepciones de enfermeras sobre la prolongación artificial de la vida

Os pacientes fora de possibilidade de cura continuam sendo alvos da obstinação terapêutica nas unidades de terapia intensiva (UTI). Esta pesquisa descritiva teve como objetivo analisar as concepções das enfermeiras sobre o cuidado aos pacientes em prolongamento artificial da vida em UTI. Foi desenvolvido em 2009, na UTI de um hospital público, na cidade de Salvador, Bahia. Foram entrevistadas 17 enfermeiras e os dados tratados conforme a análise de conteúdo temática de Bardin. Como resultado obteve-se a categoria principal: Percebendo a obstinação terapêutica. E as subcategorias: Acreditando no limite da vida; Sofrendo com o prolongamento artificial da vida. Conclui-se que as enfermeiras acreditam que deve existir limitação nas condutas terapêuticas e consideram o prolongamento artificial da vida fonte geradora de sofrimento para o paciente...

Patients with no chance of cure in intensive care unit (ICU) are still targets of therapeutic obstinacy. This descriptive study aimed at analyzing views of female nurses on the care of ICU patients by means of artificial prolongation of life. It was carried out in the ICU of a large public hospital in the city of Salvador, Bahia, Brazil, in 2009. Seventeen (17) nurses were interviewed and data were treated on the basis of Bardin’s thematic content analysis. The main outstanding category was Acknowledging therapeutic obstinacy; with the outstanding subcategories Acknowledging limits to life; Suffering from artificial prolongation of life. Conclusions show nurses believe there should be limits to therapeutic approaches and they consider artificial prolongation of life to be a source for patient’s suffering...

Los pacientes sin posibilidad de cura siguen siendo víctimas de la obstinación terapéutica en las unidades de cuidados intensivos (UCI). Este estudio descriptivo tuvo como objetivo analizar las concepciones de las enfermeras sobre el cuidado a los pacientes en prolongación artificial de la vida en UCI. Fue desarrollado en 2009, en la UCI de un hospital público, en la ciudad de Salvador, Bahia-Brasil. Se entrevistaron 17 enfermeras y los datos procesados de acuerdo con el análisis de contenido temático de Bardin. Como resultado se obtuvo la categoría principal: percibiendo la obstinación terapéutica. Y las subcategorías: Creyendo en el límite de la vida; Sufriendo con la prolongación artificial de la vida. En conclusión, las enfermeras creen que debe haber limitaciones en los enfoques terapéuticos y que a si la prolongación artificial de la vida es una fuente de sufrimiento para el paciente...

Implicancias éticas en el manejo del niño gravemente enfermo atendido en una Unidad de Paciente Crítico Pediátrica / Implicações éticas no manejo da criança gravemente enferma atendida na Unidade Pediátrica de Paciente Crítico / Ethical implications in management of gravely ill children attended in a Pediatric Patient Critical Unit

Objetivos: Identificar el manejo clínico actual del niño gravemente enfermo atendido en una Unidad de Paciente Crítico Pediátrica (UPCP), analizar las implicancias éticas del manejo y proponer estrategias para el manejo desde una perspectiva bioética. Métodos: Revisión bibliográfica en las bases de datos Medline/Pubmed, Lilacs, ProQuest, Cinhal y SciELO, entre abril y julio de 2012. Para el análisis fueron seleccionados 29 artículos que cumplían con los criterios de inclusión. Resultados: Los avances en la medicina y la incapacidad para reconocer y comprender la muerte como algo natural hacen cada vez más difícil establecer el límite entre un tratamiento proporcionado y uno desproporcionado. Con el afán de otorgar un marco moral y facilitador para la toma de decisiones, la bioética -y en particular la teoría principalista- pone a disposición del equipo de salud cuatro principios reguladores del ejercicio profesional: autonomía, no-maleficencia, beneficencia, y justicia. El correcto equilibrio entre ellos permitirá otorgar cuidados basados en una ética responsable. Conclusión: El manejo del niño gravemente enfermo atendido en una UPCP requiere de un cambio en la cultura de las organizaciones de salud, en la que se conciba la muerte como algo natural, se reconozca la importancia de una toma de decisión discutida y argumentada, considerando a todas las partes involucradas, incluyendo a los profesionales de enfermería en el proceso, y que exista la posibilidad de recurrir a un Comité de Ética Asistencial -competente, interdisciplinario y permanente- cuando el equipo de salud no llegue a un acuerdo.

Aims: To identify the current clinical management of children gravely ill attended in a Pediatric Patient Critical Unit (PPCU), to analyze the ethical implication of management and to propose strategies for the management from a bioethical perspective. Methods: Bibliography revision using data base Medline/Pubmed, Lilacs, ProQuest, Cinhal and SCIELO between April and July 2012. For analysis, 29 articles were selected that fulfilled inclusion criteria. Results: Medical advances and the incapacity to recognize and understand death as something natural increasingly make more difficult to establish the limit between a proportionate and disproportionate treatment. With the eagerness of finding a moral framework to facilitate decision making, bioethics -and particularly principle based theory- provides for health care team four principles regulating professional exercise: autonomy, non-maleficence, beneficence and justice. The correct balance among them will allow to provide basic care with responsible ethics. Conclusion: The management of gravely ill children attended at PPCU requires a change in the culture of health care organizations, in which death be viewed as something natural, the importance of decision making after arguing and dialoguing be recognized, considering all stakeholders involved, including nurse professionals in the process, and that it will be possible to recur to a health care ethical committee -competent, interdisciplinary and permanent- when health care team does not arrive to an agreement.

Objetivos: Identificar o manejo clínico atual da criança gravemente enferma atendida numa Unidade Pediátrica de Paciente Crítico (UPCP), analisar as implicações éticas do manejo e propor estratégias para o manejo a partir de uma perspectiva bioética. Métodos: Revisão bibliográfica nas bases de dados Medline/Pubmed, Lilacs, ProQuest, Cinhal y SciELO, entre abril e julho de 2012. Para a análise foram selecionados 29 artigos que satisfaziam os critérios de inclusão. Resultados: os avanços na medicina e a incapacidade para reconhecer e compreender a morte como algo natural tornam cada vez mais difícil estabelecer o limite entre um tratamento proporcional e um desproporcional. Com o desejo de outorgar um marco moral e facilitador para a tomada de decisões, a bioética - em particular a teoria principialista - põe à disposição da equipe de saúde quatro princípios reguladores do exercício profissional: autonomia, não-maleficência, beneficência, e justiça. O correto equilíbrio entre eles permitirá proporcionar cuidados baseados numa ética responsável. Conclusão: O manejo da criança gravemente enferma atendida numa UPCP requer uma mudança na cultura das organizações de saúde, na qual se admita a morte como algo natural, se reconheça a importância de uma tomada de decisão discutida e argumentada, considerando todas as partes envolvidas, incluindo os profissionais de enfermagem no processo, e que exista a possibilidade de recorrer a um Comitê de Ética Assistencial - competente, interdisciplinar e permanente - quando a equipe de saúde não chegue a um acordo.