En busca del buen morir / In search of a good death

La muerte siempre ha generado desconcierto, por lo que acompañar en este proceso de final de vida conlleva un alto compromiso existencial. Si a esta difícil tarea se le agregan los condicionantes hospitalarios o legales que sufren los enfermos en su agonía, estamos ante una muerte aterradora, muy distante de una partida que pueda ser considerada amorosa. Como sabemos, la palabra "clínica" hace referencia a la práctica de atender al pie de la cama del paciente, aliviando el dolor del que está por partir; sin embargo, el "corsé legal" de la muerte está alejando al médico de aquel que debiera recibir toda su atención y sus cuidados, atándole el brazo para acompañarlo en el buen morir. Deberíamos debatir y acordar una estrategia que enriquezca la experiencia del momento final de la vida, de modo que ese conjunto acotado de pacientes pueda elegir su forma de partir. Es de un valor incalculable despertar la compasión en este tema tan importante que preocupa al ser humano desde los inicios de la civilización. Sería muy fructífero que aprovechemos la transmisión de sabiduría de siglos de antiguas culturas que han sabido cuidar con humildad la vida hasta el instante de morir. (AU)

Death has always implied confusion, so accompanying this end-of-life process entails a highexistential commitment. If we add to this difficult task the hospital or legal constraints suffered bypatients in their agony, we are facing a terrifying death, very far from a departure that can be considered a loving one. As we know, the word "clinical" refers to the practice of caring for the patient very close to the bed, alleviating the pain of whom is about to leave; however, the "legal corset" of death is separating the doctor from the one who should receive all his attention and care, preventing him from accompanying the pacient in his/her good dying. We should discuss and agree on a strategy that enriches the experience of the end of life, so that patients could choose the way to leave. It is of incalculable value to awaken compassion on this important issue that has concerned human since the beggining of civilization. It would be very fruitful if we take advantage of the enormous wisdom of ancient cultures that have humbly cared for life until the moment of death. (AU)

Translation, Validity and Internal Consistency of the Quality of Dying and Death Questionnaire for Brazilian families of patients that died from cancer: a cross-sectional and methodological study

ABSTRACT BACKGROUND: The Quality of Dying and Death Questionnaire (QoDD) may prove to be an important evaluation tool in the Brazilian context, and, therefore, can contribute to a more precise evaluation of the dying and death process, improving and guiding the end-of-life patient care. OBJECTIVE: To translate and cross-culturally adapt the QoDD into Brazilian Portuguese and measure its validity (convergent and known-groups) and internal consistency DESIGN AND SETTING: A cross-sectional, methodological study was conducted at the Hospital de Câncer de Barretos, Brazil METHODS: A total of 78 family caregivers participated in this study. Semantic, cultural, and conceptual equivalences were evaluated using the content validity index. The construct validity was assessed through convergent validation and known groups analysis [presence of family members at the place of death; feel at peace with dying; and place of death (hospital versus home; hospital versus Palliative Care)]. Internal consistency was evaluated using Cronbach's alpha. RESULTS: The questionnaire was translated into Brazilian Portuguese and presented evidence of a clear understanding of its content. Cronbach's alpha values were ≥ 0.70, except for the domains of treatment preference (α = 0.686) and general concerns (α = 0.599). The convergent validity confirmed a part of the previously hypothesized correlations between the Palliative Care Outcome Scale-Brazil (POS-Br) total scores and the QoDD domain scores. The QoDD-Br domains could distinguish the patients who died in palliative care and general wards. CONCLUSION: The QoDD-Br is a culturally adapted valid instrument, and may be used to assess the quality of death of cancer patients.

Substance Use Disorder Among Bereaved Individuals: A Systematic Review / Transtorno por Uso de Substâncias entre Pessoas em Luto: Uma Revisão Sistemática / Trastorno por Uso de Sustancias entre Personas en Duelo: Una Revisión Sistemática

Abstract Substance use disorder (SUD) is related to several psychosocial factors, such as grief. This study aimed to find an association of SUD among bereaved individuals based on a systematic review. The research was registered in the PROSPERO platform and the following databases were used: MEDLINE, PsycNET, LILACS, PubMed, EMBASE, CINAHL, and SciELO. The Rayyan software tool was used and this study was performed under the guidelines of the PRISMA protocol. In total, 17 articles were eligible, of which more than 88% showed an association between SUD and the grieving process and almost 60% associated grief and drug use with depression and anxiety. Alcohol was the most used substance. These findings may contribute to future studies on grief and substance use and underlie the elaboration of preventive actions for drug use.

Resumo O Transtorno por Uso de Substâncias (TUS) relaciona-se a vários fatores psicossociais; como o luto. Este trabalho teve por objetivo identificar uma associação do TUS entre pessoas em processo de luto, a partir de uma revisão sistemática. A pesquisa foi registrada na plataforma PROSPERO e foram utilizadas as seguintes bases de dados: MEDLINE, PSYCNET, LILACS, PubMed, EMBASE, CINAHL e SciELO. Foi utilizado o software Rayyan e as etapas do protocolo PRISMA foram seguidas. Foram elegíveis 17 artigos, dos quais mais de 88% apresentaram uma associação entre o TUS e o processo de luto, e quase 60% associaram o luto e o consumo de drogas à depressão e à ansiedade. A substância mais consumida foi o álcool. Estes achados podem contribuir para futuras pesquisas na área de luto e uso de substâncias, bem como subsidiar a formulação de ações preventivas ao uso de drogas.

Resumen El Trastorno por Uso de Sustancias (TUS) está relacionado con varios factores psicosociales, como el duelo. A partir de una revisión sistemática, este trabajo se propuso identificar una asociación del TUS en personas en proceso de duelo. La investigación se registró en la plataforma PROSPERO, y se utilizaron las siguientes bases de datos: MEDLINE, PSYCNET, LILACS, PubMed, EMBASE, CINAHL y SciELO. Se utilizó el software Rayyan, y se siguieron los pasos del protocolo PRISMA. Diecisiete artículos fueron elegibles, de los cuales más del 88% mostraron una asociación entre el TUS y el proceso de duelo, y casi el 60% asociaron el duelo y el consumo de drogas con la depresión y la ansiedad. La sustancia más consumida fue el alcohol. Estos resultados pueden contribuir a futuras investigaciones sobre el duelo y el consumo de sustancias, además de subvencionar la formulación de acciones preventivas para el consumo de drogas.

La hipertensión arterial como causa de muerte: causa básica vs causas múltiples. Cuba, 2013-2019 / Arterial hypertension as a cause of death: basic cause vs multiple causes. Cuba, 2013-2019

Introducción: Las tasas de mortalidad "por" hipertensión arterial subestiman el impacto de esta causa en la mortalidad. Objetivo: Determinar el cambio de la contribución de la hipertensión arterial como causa de muerte, al involucrar todas sus menciones en el certificado de defunción en Cuba en el periodo 2013-2019. Material y Métodos: Se realizó un estudio observacional descriptivo de las defunciones ocurridas en Cuba entre enero de 2013 y diciembre de 2019. Se calcularon las Tasas de Mortalidad "por" (causa básica) y "con" hipertensión arterial (causas múltiples). Además, se determinaron las causas básicas más asociadas a la mención de esta afección. Resultados: Los riesgos de morir "por" y "con" hipertensión arterial evidencian un ascenso. El segundo es, como promedio, cuatro veces mayor que el primero; lo que significa que el análisis de mortalidad "por· HTA continúa infravalorando el papel de esta afección dentro de los procesos que causan muerte. Ambos riesgos son mayores para hombres y para los adultos de 85 años y más. Como promedio, en 15,7 por ciento de las defunciones se mencionó a la HTA en alguna de las partes del certificado; sin embargo, solo en 3,8 por ciento fue declarada como causa básica. Las enfermedades cerebrovasculares y las del corazón son las dos causas básicas en las que la HTA es más frecuentemente causa asociada. Conclusiones: La contribución de la hipertensión arterial a la mortalidad es mayor a lo que traduce el análisis tradicional. Disponer de estimaciones de causas múltiples fortalecería la planificación en salud y potenciaría los análisis de carga de enfermedad(AU)

Introduction: Mortality rates "due to" arterial hypertension underestimate the impact of this cause on mortality. Objective: To determine the change in the contribution of arterial hypertension to the cause of death, by analyzing all its mentions in the death certificates in Cuba in the period 2013-2019. Material and Methods: A descriptive observational study of deaths that occurred in Cuba between January 2013 and December 2019 was carried out. Mortality rates "due to" (basic cause) and "with" arterial hypertension (multiple causes) were calculated. In addition, the most common underlying causes associated with the mention of this condition were determined. Results: The risks of dying "due to" and "with" arterial hypertension show an increase. The second risk is, on average, four times higher than the first one, which means that the analysis of mortality "due to" arterial hypertension continues to underestimate the role of this condition within the processes causing death. Both risks are higher for men and adults aged 85 years and older. On average, arterial hypertension was mentioned in some parts of the certificates in 15,7 percent of the deaths registered during the period; however, it was declared as the basic cause only in 3,8 percent of them. Cerebrovascular and heart diseases are the two underlying causes in which arterial hypertension is the most frequently associated cause. Conclusions: The contribution of arterial hypertension to mortality is greater than that identified in the traditional analysis. Having estimates of multiple causes would strengthen health planning and enhance the analyses of disease burden(AU)

Representación social de la muerte en un grupo de médicos / Social representation of death in a group of physicians

RESUMEN Introducción: En la relación de los médicos con la muerte en el escenario de lucha que es el hospital se manifiestan procesos psicológicos que legitiman sus conductas de rol. Objetivo: Caracterizar la representación social de la muerte en un grupo de médicos del Hospital Universitario "General Calixto García". Método: Investigación mixta, explicativa y de corte transversal realizada entre junio y septiembre del 2019 en una muestra de 35 médicos. En la etapa cuantitativa se aplicó el instrumento Asociación libre de palabras y para la etapa cualitativa la entrevista semiestructurada. Resultados: El núcleo central está integrado por la categoría Impacto afectivo (FR= 60; M= 3.5), en tanto que los contenidos del sistema periférico que se encuentra más próximos al núcleo en orden estructural son las categorías Concepción racional (FR=20; M= 2.8) y Estado postmorten (FR= 22; M= 4.4); esto en el contexto del Escenario del proceso morir donde ellos interactúan. Discusión: La representación social de la muerte se caracteriza por tener un núcleo central que refleja la diversidad de emociones que se vivencian. En tanto que el sistema periférico da cuenta de los aspectos cognoscitivos que se emplean para una Concepción de la Muerte y que se organizan en torno a la racionalidad biológica como parte del contexto de las características del Escenario del proceso de morir con el que se relacionan.

ABSTRACT Introduction: In the relationship of physicians with death in the scene of struggle that is the hospital, inter and intrasubjective processes are manifested that legimitize their role behaviors. Objective: Characterize the social representation of death in a group of physicians from a clinical-surgical hospital in Havana. Method: Mixed, explanatory and cross-sectional research carried out between June and September 2019 in a non-probabilistic simple of 35 physicians. In the quantitative stage, the Free association of words was applied and for the Qualitative stage, the semi-structured interview Results: The central nucleus is made up of the Affective Impact (FR= 60; M= 3.5) category; while the contents of the peripheral system that are closest to the nucleus in structural order are the categories Rational Conception (FR=20; M= 2.8) and Post-mortem State (FR= 22; M= 4.4). Discussion: The social representation of death is characterized by having a central nucleus that reflects the diversity of emotions that are experienced. While the peripheral system accounts for the cognitive aspects that are used for a conception of death and that are organized around biological rationality. This in the context of the characteristics of the Dying Process Scenario with which they related.

Perda, luto e resiliência na pandemia de COVID-19: implicações para a prática com famílias / Loss, grief and resilience amid the COVID-19 pandemic: implications for practice with families

O presente estudo aborda perda, luto e resiliência na pandemia de COVID-19, apresentando considerações sobre a prática sistêmica com famílias. Trata-se de uma revisão narrativa da literatura nacional e internacional, em que foram sumarizados achados empíricos e recomendações para intervenções clínicas, com base na perspectiva sistêmica, face às demandas emergentes no atual contexto e à noção de experiência coletiva. Foram discutidas as múltiplas perdas associadas à COVID-19, as quais impactam estilos de vida, padrões de comportamento e interação, normas culturais e práticas relativas ao processo de morrer e à morte, aumentando potencialmente o risco de luto complicado, durante e após a pandemia. Enfatizou-se também o desenvolvimento adaptativo em meio às circunstâncias difíceis, com destaque à noção de resiliência familiar e a possíveis formas de promovê-la, incluindo a terapia familiar. Ademais, foram abordadas algumas das particularidades do processo clínico junto a famílias que experienciaram perdas na pandemia, incluindo recursos que podem ser utilizados pelo terapeuta, bem como desafios comumente vivenciados pelos profissionais nesse cenário.

The current study addresses loss, grief, and resilience amid the COVID-19 pandemic, presenting implications for systemic practice with families. This is a narrative review of the national (Brazilian) and international literature, in which empirical findings and recommendations for clinical interventions have been summarized, based on a systemic perspective, given the emerging demands in the current scenario and the notion of collective experience. We have discussed the multiple losses associated with COVID-19, which have an impact on lifestyles, patterns of behavior and interaction, and cultural norms and practices related to the process of death and dying, potentially increasing the risk of complicated grieving processes, during and after the outbreak. Adaptive development amid difficult circumstances have also been highlighted, with emphasis on the notion of family resilience and possible ways of promoting it, including family therapy. Furthermore, some of the particularities of the clinical process with families who experienced losses during the pandemic have been addressed, including resources that can be used by the therapist, as well as challenges commonly experienced by professionals in this scenario.

O luto de pais: considerações sobre a perda de um filho criança / Parents' grief: thoughts on the loss of a child / El duelo de los padres: consideraciones Sobre la pérdida de un hijo todavía niño

A morte fora de lugar, a perda dos projetos futuros, das idealizações depositadas no filho e o lugar insubstituível que ele ocupa no imaginário dos pais dificultam o processo de elaboração do luto. Neste trabalho, buscou-se compreender como os pais vivenciam a perda de um filho ainda criança e discutir aspectos característicos desses casos. Foi realizada uma pesquisa qualitativa, em que se entrevistou 11 pais que perderam os filhos crianças, cujas mortes ocorreram em um intervalo que varia entre quatro meses e um ano e quatro meses em relação à entrevista. As entrevistas foram semiestruturadas com eixos norteadores que direcionaram os temas a serem abordados, e os dados foram trabalhados por meio da análise temática, revelando os núcleos de sentido da comunicação. Entre os principais elementos constituintes das narrativas, destacam-se: a dor incomparável, culpa, as experiências diferentes entre pais e mães, os outros filhos, o sentimento de perda de uma parte de si, a perda do objeto narcísico e a vivência do luto diante do funcionamento social contemporâneo. O estudo demonstrou a importância de considerar a singularidade do luto parental e não o confundir com a melancolia. Esses aspectos precisam ser reconhecidos, junto às diferenças que marcam as experiências distintas entre pai e mãe, o narcisismo dos pais e o contexto contemporâneo, a fim de auxiliar na construção de intervenções adequadas nesses casos. Sublinha-se a importância da fala na organização de uma narrativa que permita a construção de um sentido para a perda e a elaboração do luto. (AU)

The sudden death; the interruption of future projects, of the idealizations set upon a child; and its irreplaceable role within parents' imagination hamper the grief resolution process due to the loss of a child. Thus, this study aimed to understand how parents experience the loss of a child, discussing particular aspects related to this situation. Through a qualitative approach, semi-structured interviews guided by thematic axes were conducted with 11 parents who had lost their children between four months and one year and four months before the interview. Collected data underwent thematic analysis, revealing the communication cores. Incomparable pain, guilt, different experiences between fathers and mothers, other children, the feeling of losing a part of themselves, the loss of a narcissistic object, and the experience of grief towards the contemporary social functioning were the main elements present in parents' narratives. This study demonstrates the importance of considering the singularity of the parental grief without misinterpreting it as melancholy. To help developing appropriate interventions aimed at these cases, one must recognize the aforementioned aspects, as well as the differences marking paternal and maternal experiences, parents' narcissism, and the contemporary context. The findings also point to the relevance of speech in organizing a narrative that enables the construction of a meaning for the loss and grief resolution.(AU)

La muerte fuera de lugar, la pérdida de proyectos futuros, de idealizaciones para el hijo y el lugar insustituible que este ocupa en lo imaginario de los padres hace que el proceso del duelo sea difícil. En este trabajo, se pretendió comprender cómo los padres vivencian la pérdida de un hijo aún niño y discutir los aspectos característicos de este caso. Para tanto, se realizó una investigación cualitativa, en que se entrevistaron 11 padres que perdieron hijos aún niños, cuyas muertes ocurrieron entre los cuatro meses y un año y cuatro meses antes de la entrevista. Las entrevistas semiestructuradas incluían ejes que direccionaron hacia temas predefinidos, y para el análisis de los datos se aplicó el análisis temático revelando los núcleos de sentido de la comunicación. Entre los principales elementos constituyentes de las narrativas se destacan: el dolor incomparable, la culpa, las experiencias diferentes entre el padre y la madre, los otros hijos, el sentimiento de perder una parte de sí, la pérdida del objeto narcisista y la vivencia del duelo por el funcionamiento social contemporáneo. El estudio demostró la importancia de considerar la singularidad del duelo parental y no confundirlo con la melancolía. Es necesario reconocer estos aspectos junto con las diferencias que marcan las experiencias distintas entre el padre y la madre, el narcisismo de los padres y el contexto contemporáneo, con la finalidad de contribuir con intervenciones adecuadas a esos casos. Se destaca la importancia del habla en la organización de una narrativa que permita la construcción de un significado para la pérdida y la elaboración del duelo.(AU)

Why Using Religious Arguments in the Euthanasia Discussion is Problematic / Por qué hacer uso de argumentos religiosos en el debate sobre la eutanasia es un tema problemático / Por que usar argumentos religiosos no debate sobre a eutanásia é um tema problemático

Abstract: In discussions about assisted dying (euthanasia, assisted suicide), those who argue 'against' legalisation often reason from a religious angle, whereas those 'in favour' adopt a secular stance. The Dutch experience is more nuanced: here, euthanasia advocacy largely originated from protestant religious believers. In this contribution, I criticise the use of religious arguments favouring any specific position. Religion may provide a heuristic context to explore norms relevant in the discussion, and religion may help us formulate our personal stance. But when it comes to societal debates (often focusing on whether or not to legalise euthanasia), we should concentrate on legal, societal, empirical, and ethical arguments that are understandable to all.

Resumen: en discusiones sobre la muerte asistida (eutanasia, suicidio asistido), aquellos que argumentan estar "en contra" de la legalización a menudo razonan desde un ángulo religioso, mientras que los que están "a favor" adoptan una postura secular. La experiencia holandesa es más matizada: aquí, la defensa de la eutanasia se originó en gran medida por creyentes religiosos protestantes. En esta contribución, critico el uso de argumentos religiosos que favorezcan cualquier posición específica. La religión puede proveer un contexto heurístico para explorar normas relevantes en la discusión, y la religión puede ayudarnos a formular nuestra postura personal. Pero cuando se trata de debates sociales (a menudo enfocados en la legalización o no de la eutanasia), debemos concentrarnos en argumentos jurídicos, sociales, empíricos y éticos que sean comprensibles para todos.

Resumo: Em discussões sobre a morte assistida (eutanásia, suicidio assistido), os que argumentam estar "contra" a legalização com frequência pensam a partir de um ângulo religioso, enquanto os que estão "a favor" adotam um posicionamento secular. A experiência holandesa é mais fusionada: aqui, a defesa da eutanásia foi originada em grande medida por crentes religiosos protestantes. Nesta contribuição, critico o uso de argumentos religiosos que favoreçam qualquer posicionamento específico. A religião pode promover um contexto heurístico para explorar normas relevantes na discussão, e a religiao pode ajudarnos a formular nosso posicionamento pessoal. Contudo, quando é tratado de debates sociais (às vezes focados na legalização ou não da eutanásia), devemos concentrar-nos em argumentos jurídicos, sociais, empíricos e éticos que sejam compreensíveis para todos.

Significados atribuídos por pais enlutados às suas experiências e aos cuidados da equipe de saúde / Meanings attributed by bereaved parents to their experiences and to the care of the healthcare team / Significados atribuidos por los padres en duelo a sus experiencias y a los cuidados del equipo de salud

O adoecimento e a morte de uma criança repercutem diretamente na vida dos pais. Diante disso, este artigo, de abordagem qualitativa, objetivou compreender os significados atribuídos por pais enlutados às suas experiências diante da perda do filho e aos cuidados desempenhados pela equipe de saúde. Realizaram-se 11 entrevistas semiestruturadas com pais que perderam filhos crianças em virtude de doença, cujos dados foram tratados conforme análise de conteúdo temática. Os resultados mostraram: a importância da participação no cuidado da criança adoecida e do contato com o filho morto; e as percepções ambivalentes em relação à equipe de saúde, que evidenciaram atenção e comunicação compreensiva e despreparo para a atuação, comunicação inadequada e falta de seguimento na assistência. Destaca-se a importância da comunicação clara e do reconhecimento da perda, além de capacitações aos profissionais para atuarem com situações de morte e luto.

The illness and death of a child reverberate directly on parents' lives. Therefore, this qualitative approach paper aimed to comprehend the meanings attributed by bereaved parents to their experiences in front of the loss of their child and to the care performed by the healthcare team. There were conducted 11 semi-structured interviews with parents who had lost their children because of an illness. Data were analyzed according to thematic content analysis. The results demonstrated: the importance of participating on the care of the sick child and the contact with the dead child; ambivalent perceptions towards the healthcare team, which evidences attention and comprehensive communication and shows unpreparedness for the performance, inadequate communication and lack of follow-up on care. It is emphasized the importance of an honest communication and the recognition of the loss, as well as training professionals to work with situations of death and grief.

La enfermedad y la muerte de un niño repercuten directamente en la vida de los padres. Asi, este artículo, de abordaje cualitativa, objetivó comprender los significados atribuidos por los padres en duelo a sus experiencias ante la pérdida de su hijo y a los cuidados desempeñados por el equipo de salud. Se realizaron 11 entrevistas semiestructuradas con padres que perdieron su niño en virtud de una enfermedad, cuyos datos fueron tratados conforme análisis de contenido temático. Los resultados mostraron: la importancia de la participación en el cuidado del niño enfermo y del contacto con el niño muerto; percepciones ambivalentes frente al equipo de salud, evidenciaron atención y comunicación comprensiva y despreparo para la actuación, comunicación inadecuada y falta de asistencia continuada. Se destaca la importancia de comunicación clara y del reconocimiento de la pérdida, así como la formación de profesionales para trabajar con situaciones de muerte y luto.

Court decisions and legal considerations about the withdrawal of the life-prolonging medical care

The Supreme Court decision made on May 21, 2009 about the withdrawal of futile life-prolonging medical care from a persistently vegetative patient provided a legal basis for patients to consent to death with dignity, and also spurred a lively debate in Korea. The legal grounding of this decision was based on the principles of human dignity, worth, and the right to pursue happiness articulated in the Article 10 of the Constitution. The Death with Dignity Act was legislated to regulate decisions about life-prolonging medical care on February 3, 2016, after extensive debate and a focus on consensus that led to two revisions. However, the issue has not been completely resolved. First, the definition of the process of dying is unclear, because the points that determine whether a patient is dying are different from a simple assessment of whether an artificial ventilator should be attached or detached. Second, the purpose of this law is the protection of human dignity, worth, and the right to pursue happiness. However, nutrition, fluids, and oxygen must continue to be supplied, even after cessation of life-prolonging medical care. Is providing a continuous supply of nutrition, fluids, and oxygen a reasonable way to satisfy the goals of Article 10 of the Constitution? Third, if the withdrawal of life-prolonging medical care is possible based on the family's agreement without the patient's input, what is the legal value of advance directives? In conclusion, it may be necessary to partially revise the law regulating decisions on the withdrawal of life-prolonging medical care through further debate.

Quality of dying and death desired by residents of Kagawa Prefecture, Japan: a qualitative study

BACKGROUND@#Achieving a desirable death is an urgent aging-related problem in Japan. However, measures of the quality of death and dying in Japan are lacking. This study aimed to identify components of a desirable death in the residents of Kagawa prefecture, Japan, through focus group interviews.@*METHODS@#A group interview was conducted with 30 residents aged 20-80 (M = 50.9, SD = 22.1 years; 43.3% ≥ 65 years; 40.0% unemployed) who had experienced the death of a closely associated person. Participants were grouped into four generations with diverse characteristics (e.g., age, sex, occupation). The interview lasted 1-2 h and involved one interviewer, one observer, and one recorder. The interview theme was "What is a desirable death?" Participants were asked "What do you want to achieve before you die?" or "What would a close friend want to experience when death is near?" We then extracted important items related to "desirable death" using serialization and observation records, while also consulting three analysts. The analysis results of the four generations were ultimately integrated into final categories.@*RESULTS@#The most common experience of a familiar death was that of parents, followed by grandparents. Half of participants had witnessed the death. Through category analysis, eight important categories related to desirable death were ultimately extracted. Nine items were identified as common to all generations. While the elderly generation had wide-ranging opinions, the younger generations' opinions tended to concentrate on satisfaction with life and family relations.@*CONCLUSION@#Eight concepts were extracted as important factors of a desirable death from the residents of Kagawa prefecture, Japan.

A Booklet for Families of Children Dying with Incurable Cancer: Development and Feasibility Study by Opinions of Pediatric Oncology Specialists

The purpose of this study was to clarify feasibility of a booklet for families of children dying with incurable cancer. Of 267 pediatric oncology specialists, 76 (28%) participated in this cross-sectional survey. Ninety-three percent of participants answered that they were “likely to use” the booklet, and 86% percent answered that they believed the booklet was “helpful” for families. Some participants described various advantages of its use as follows: “able to communicate something that is difficult to put into words,” “easy to understand for families,” “families can read whenever they choose to,” and “able to grasp the direction of dying.” In contrast, other participants described points of attention of use as follows: “optimal timing to bring out,” “acceptance of families,” “direction as interdisciplinary team,” “confidential relationship between families and interdisciplinary team,” “disinclination among health care providers,” and “information volume of the booklet.” Thus, our results validated feasibility of the booklet. In conclusion, pediatric oncology specialists should provide their support of utilizing the booklet for families and assessing each family condition and advantage/attention of using the booklet.

Signification and Challenges of the Act on Life-Prolongation Determination - With focus on Patient-Oriented Medical Care / 의료커뮤니케이션

BACKGROUND: The Purpose of this study is to look into the signification and challenges of the Act on life prolongation determination of a patient who is going under hospice palliative medical care and a deathbed process (hereinafter referred to as “the Well-Dying Act”) from a position of a patient.METHODS: To improve the problems exposed in the process of enforcement of the Well-Dying Act, it's important to find a solution point after looking into improvements from a position of a patient through communication in line with the intent of law enactment. Hereupon, this study intended to look into improvements through the interviews with family members of a patient, and doctors.RESULTS: it was found that improvements include reduction in the domain of family for consent to an interruption of life prolongation medical care, necessity of establishment of a medical institution ethics committee for implementing the Well-Dying Act, simplification of the relevant form, abolition of a criminal penalty clause, and introduction of an authorized agent, etc.CONCLUSION: This study thinks that it stands to reason to limit the domain of family for consent to an interruption of life prolongation medical care to a patient's spouse, parents and children in principle; nevertheless, when all these persons are not existent, reasonable is the way to impose a duty of getting unanimous consent to a patient's well-dying from all direct lineal ascendants and descendants of the patient on a relevant medical institution.

Forward and maneuver: how to save life and injuries in an air rescue room or intensive care unit? / 中华危重病急救医学

Aviation medicine is being recognized as a rising star and an indispensable part of the "trinity"medical emergency network composed of land, water and air. The unparalleled mobility and traffic advantages of aircraft, especially rotorcraft (helicopter), are playing an increasingly important role in rescuing the dying and wounded, especially the critical patients, and thus derive a new medical operation mode. How to adapt to the development of the situation and the progress of the times, give full play to the advantages of aviation medical care? The key factors are improvement of the level of service efficiency, strength of learning, practice courage, innovation, and good at summing up to keep pace with the times.

Repetitive Nerve Stimulation in Amyotrophic Lateral Sclerosis / 中华医学杂志(英文版)

<p><b>Background</b>Nowadays, it is widely known that decremental responses in low-frequency repetitive nerve stimulation (LF-RNS) are frequently observed in patients with amyotrophic lateral sclerosis (ALS). The pathological mechanism of this phenomenon remains unknown. This study aimed to illuminate the features of RNS in Chinese patients with ALS.</p><p><b>Methods</b>Clinical and electrophysiological data of 146 probable and definite ALS patients who underwent RNS were retrospectively enrolled and analyzed. LF-RNS (3 Hz) was performed in trapezius, deltoid, abductor digiti minimi (ADM), quadriceps femoris, and tibialis anterior. High-frequency RNS (HF-RNS, 10 Hz) was performed only in ADM. The two-sample t-test and Chi-squared test were used for statistical analysis.</p><p><b>Results</b>Decremental responses to LF-RNS (≥10%) in at least one muscle were detected in 83 (56.8%) of the cases and were most commonly seen in trapezius and deltoid. The incidence of decremental response was higher in patients with upper limb onset. Incremental responses to HF-RNS (≥60%) in ADM were observed in 6 (5.6%) of the cases. In 106 muscles with decremental response, 62 (57.4%) muscles had a continuous decremental pattern, more than a U-shape pattern (37 cases, 34.3%). Nineteen cases showed definite decrements in LF-RNS tests in trapezius, while no abnormalities were found in the electromyography and neurological examination of the sternocleidomastoid muscle, supplied by the accessory nerve as well.</p><p><b>Conclusions</b>Decremental responses in the RNS are commonly observed in ALS patients. The findings regarding the trapezius indicated that some ALS onsets could be initiated by a "dying back" process, with destruction of neuromuscular junctions (NMJs) before motor neurons. Incremental responses in the ADM implied damage of the NMJs involved both the post and presynaptic membranes.</p>

Mulheres idosas e sua experiência após a viuvez / Elderly women and their experience after widowhood / Mujeres ancianas y su experiencia después de la viudez

O objetivo do presente estudo foi compreender a percepção de idosas sobre os recursos que favoreceram o processo de adaptação à viuvez, bem como as transformações em suas vidas, decorridos ao menos dois anos da morte do cônjuge. Três viúvas responderam ao questionário sociodemográfico e à entrevista semiestruturada. A análise de conteúdo qualitativa apontou dificuldades iniciais, relativas à necessidade de realinhamento das relações interpessoais e da rotina. Pôde-se constatar que a proximidade nas relações familiares, o apoio social percebido e a espiritualidade se caracterizaram como importantes recursos, minimizando o sentimento de solidão desencadeado com a morte do companheiro. Discutiu-se a possível influência de variáveis socioeconômicas no processo de elaboração do luto. Destacou-se a importância de profissionais que atuam com idosos conhecerem os desdobramentos provocados pela viuvez para, assim, oferecer suporte emocional com o intento de prevenir sintomas psicopatológicos, bem como promover saúde e qualidade de vida na velhice.

The aim of this study was to understand the perception of the elderly women about resources that favored the process of adapting to widowhood, and the changes in their lives, at least two years after the death of their spouse. Three widows answered a sociodemographic questionnaire and a semi-structured interview. Qualitative content analysis pointed out initial difficulties related to the need for realignment of interpersonal relationships and routine. It might be noted that the closeness in family relationships, perceived social support and spirituality were characterized as important resources, minimizing the feeling of loneliness triggered by the death of their mate. The possible influence of socioeconomic variables in the grief process was discussed. The importance of professionals knowing the impact caused by widowhood and, thus, offering emotional support, was highlighted. Therefore, it is possible to prevent psychopathological symptoms as well as to promote health and quality of life in old age.

El objeto del presente estudio fue comprender la percepción de las ancianas sobre los recursos que favorecieron el proceso de adaptación a la viudez, así como las transformaciones en sus vidas, transcurridos al menos dos años de la muerte del cónyuge. Tres viudas respondieron a un cuestionario sociodemográfico y a una entrevista semiestructurada. El análisis de contenido cualitativo señaló dificultades iniciales, relativas a la necesidad de realineamiento de las relaciones interpersonales y de la rutina. Se puede constatar que la proximidad en las relaciones familiares, el apoyo social percibido y la espiritualidad se caracterizaron como importantes recursos, minimizando el sentimiento de soledad desencadenado con la muerte del compañero. Se discutió la posible influencia de variables socioeconómicas en el proceso de elaboración del luto. Se destacó la importancia de que los profesionales que actúan junto a los ancianos conozcan los desdoblamientos provocados por la viudez para, así, ofrecer soporte emocional con la intención de prevenir síntomas psicopatológicos, así como promover la salud y la calidad de vida en la vejez.

A percepção de residentes multiprofissionais da área da saúde sobre o processo de morte / Healthcare multiprofessional residents' perception towards the dying process / Percepción de residentes multiprofesionales de la área de salud acerca del proceso de muerte

A morte e o processo de morrer estão constantemente na rotina dos profissionais de saúde, porém, estes nem sempre estão preparados para lidar com estas questões. O objetivo do estudo é verificar a percepção dos profissionais residentes da área da saúde sobre a morte. Trata-se de uma pesquisa descritiva exploratória de abordagem quantitativa, realizada com 129 residentes em um hospital terciário, e contemplou nove profissões, com predominância feminina e idade média de 25anos (desvio padrão de 2,1 anos). Foi aplicada a Escala de Avaliação do Perfil de Atitudes Acerca da Morte (EAPAM). A maioria dos participantes (63%) apresentou aceitação neutra em relação à morte, seguido de aceitação religiosa (16%). Em terceiro lugar está o medo da morte (11%). Por último, o evitamento e a aceitação de escape tiveram resultado similar (5% cada). O perfil de atitude do profissional em relação à morte pode contribuir com o desenvolvimento da Síndrome de Burnout, prejudicando sua saúde e qualidade do serviço prestado.

Death and the dying process are constantly in the health professionals' routine, though they are not always prepared to deal with those issues. The objective of this study is to check the healthcare resident professionals' perception of death. It is a descriptive exploratory research with quantitative approach made with 129 residents in a tertiary hospital, and it covered nine professions, with female predominance and average age of 25 (standard deviation of 2.1 years). The Death Attitude Profile Revised (DAP-R) was the instrument used. Most participants (63%) had neutral acceptance of death, followed by religious acceptance (16%). In third place is the fear of death (11%). At last, the avoiding of death and the escape acceptance had similar results (5% each). The professional's attitude profile toward death can contribute to the development of the Burnout Syndrome, which is harmful for their health and for the quality of the service done.

La muerte y proceso de morir están constantemente en la rutina de profesionales de salud, pero no siempre están listos para hacer frente a esas cuestiones. El objetivo del estudio es verificar la percepción de profesionales residentes del área de salud sobre la muerte. Se trata de una investigación descriptiva exploratoria con abordaje cuantitativa, efectuada con 129 residentes de hospital terciario, e incluyó nueve profesiones, con predominio del sexo femenino y edad media de 25 años (desviación estándar de 2,1 años). Se aplicó la Escala de Evaluación del Perfil de Actitudes sobre la Muerte. La mayoría de los participantes (63%) tuvieron una aceptación neutra en relación a la muerte, seguido de aceptación religiosa (16%). En tercer lugar encuentra-se el miedo (11%). Por último, evitación y aceptación del escape obtuvieron resultado similar (5% cada uno). El perfil de actitud del profesional en relación a la muerte puede contribuir al desarrollo del Síndrome de Burnout, perjudicando su salud y calidad del servicio prestado.

O Vazio de Sentido: Suporte da Religiosidade para Pacientes com Câncer Avançado / Emptiness of sense: religiosity support for patients with advanced cancer / El vacío de sentido: soporte de la religiosidad para pacientes con cáncer avanzado

Resumo Pacientes com câncer avançado, muitas vezes, deparam-se com um vazio de sentido, tanto por conta de movimentos externos, como o afastamento e falta de olhar da equipe, de amigos e familiares, quanto por dimensões subjetivas e singulares relacionadas à vivência da doença. Com isso, objetivou-se compreender quais os sentidos que os pacientes constroem para a vivência do adoecimento grave. Foi realizada uma pesquisa descritiva e exploratória, de cunho qualitativo, com 12 pacientes com câncer avançado, internados no serviço de Hematologia-Oncologia de um hospital-escola do interior do Rio Grande do Sul, com base em entrevistas semiestruturadas e análise de conteúdo. Verificou-se que os entrevistados buscaram construir um sentido para sua vivência, predominantemente por meio da religiosidade, que lhes ofereceu possibilidades de compreensão, suporte, conforto, sentimento de controle, entre outras construções de significação para a doença. Foi possível perceber que, por vezes, a religiosidade não se mostrou suporte suficiente para o trabalho de construção de significados para o adoecimento. Assim, pensa-se que a religiosidade é capaz de lhes trazer certas explicações e suportes diante do esvaziamento dos sentidos provocado pela doença, contudo, faz-se necessário que outras estratégias sejam construídas para auxiliar o paciente a lidar com as angústias frente à doença e à possibilidade de morte....(AU)

Abstract Patients with advanced cancer face, many times, emptiness of sense, due both to external movements, such as the distance and lack of attention of the health professionals, friends and family, and to subjective and singular dimensions related to the illness experience. Thus, this study aimed to comprehend what are the senses attributed by the patients to the experience of serious illness. Therefore, it was conducted a qualitative, descriptive and exploratory research, with twelve patients with advanced cancer, hospitalized in the division of Hematology-Oncology of an university hospital, in the state of Rio Grande do Sul. Data were collected through semistructured interviews and the analysis was based in the content analysis. It was found out that the participants tried to build a sense for their experience, mainly through religiosity, that would offer them possibilities of comprehension, support, comfort, sense of control, among other significations for the illness. However, it was shown that, sometimes, religiosity was not a sufficient support in the task of building meanings for the illness. Thus, it is assumed that religiosity is capable of bringing them some answers and support when facing the emptiness of senses caused by the illness; nevertheless, the development of other strategies is necessary in order to assist the patient while dealing with the distress in face of the illness and of the death possibility....(AU)

Resumen Los pacientes con cáncer avanzado, muchas veces, se deparan con un vacío de sentido, tanto por movimientos externos, como el alejamiento y la falta de atención del equipo, amigos y familiares, como por dimensiones subjetivas y singulares relacionadas a la vivencia de la enfermedad. Así, se buscó comprender los sentidos que los pacientes construyen para la vivencia de una enfermedad grave. Para tal fin, se utilizó una investigación descriptiva y exploratoria, de naturaleza cualitativa, realizada con doce pacientes con cáncer avanzado, internados en el servicio de Hematología-Oncología de un hospital-escuela del interior de Rio Grande do Sul. La recolección de datos se realizó con entrevistas semiestructuradas y el análisis a través del análisis de contenido. Se entendió que los entrevistados buscaron construir un sentido para la vivencia, predominantemente por medio de la religiosidad, lo que les ofreció posibilidades de comprensión, sustento, consuelo, sentimiento de control, entre otros. Además, fue posible percibir que, a veces, la religiosidad no se mostró suficiente como sustento para el trabajo de construcción de significados para la enfermedad. Así, se piensa que la religiosidad es capaz de traer ciertas explicaciones y soporte frente a la pérdida de los sentidos provocados por la enfermedad; sin embargo, es necesario que otras estrategias sean construidas para auxiliar al paciente a tratar con las angustias frente a la enfermedad y a la posibilidad de muerte....(AU)

The true feelings of dying patients in China:a meta-synthesis of qualitative studies / 中华护理杂志

Objective To conduct a systematic review on the need and experience of patients in end of life and provide evidence-based guidance for delivery of end-of-life care in hospital and community settings. Methods Two Chinese (CBM and CNKI) and four English relevant databases (PsycINFO,MEDLINE,EMbase and CINAHL) were in-cluded to retrieve literatures on Chinese dying patients' needs and experience between inception and August 2016. The JBI Critical Appraisal Tool for qualitative studies in Australia was used to evaluate the quality of studies. The searching results were synthesized by employing Integrating Methods. Results Seventy-five findings were extracted from 9 qualified studies. The 75 findings were sequently integrated into 5 categories and finally 2 synthesized re-sults were summarized from the 5 categories. Integration result 1:under the sufferings from both physical and psy-chological aspects,dying patients require support from both family and society. Integration result 2:although death is acceptable for patients,they still hope for dignity and goals of life. Conclusion Needs of patients in end-of-life should be understood and respected. Reasonable and effective measures need to be taken to meet their needs and improve their quality of life.

O sentido do cuidado diante do fenômeno da morte em idosos a partir de uma hermenêutica em Heidegger / The sense of care in the face of the phenomenon of death in the elderly from a hermeneutic in Heidegger

Trata-se de uma dissertação de mestrado que objetiva desvelar o sentido do cuidado da equipe de enfermagem diante do fenômeno da morte em idosos tendo como referência teóricametodológica a fenomenologia de Heidegger. Como participantes da pesquisa terão enfermeiros e técnicos de Enfermagem com a vivencia do cuidado em idosos. Além de respeitar os aspectos éticos e legais que constam na Resolução 466/12 do Conselho Nacional de Saúde, esta pesquisa obteve aprovação no Comitê de ética em Pesquisa do Hospital Universitário (CAAE: 62132016.1.0000.5243). O cenário de estudo foi realizado em um hospital universitário, tendo como técnica de coleta de dados a entrevista fenomenológica, sendo mediada por uma questão norteadora: Fale do sentido que você doa acerca do fenômeno da morte de idosos. Pela análise compreensiva dos depoimentos, abriu-se uma compreensão mediana que se acredita ser suficiente para a conquista do fio condutor da hermenêutica: O sentido do cuidado dos enfermeiros diante do fenômeno da morte em idosos. Como resultados e conclusões a equipe de enfermagem demonstrou fragilidades inerentes aos medos culturais sobre a morte. Contudo, não se afastaram da tecnicidade e amorosidade que a ciência do cuidado prima

It is a master's thesis that aims to unveil the nursing team's sense of care in the face of the phenomenon of death in the elderly, using Heidegger's phenomenology as a theoreticalmethodological reference. As participants of the research will have nurses and nursing technicians with the experience of care in the elderly. In addition to respecting the ethical and legal aspects of Resolution 466/12 of the National Health Council, this research was approved by the Research Ethics Committee of the University Hospital (CAAE: 62132016.1.0000.5243). The study scenario was carried out in a university hospital, using as data collection technique the phenomenological interview, being mediated by a guiding question: Talk about the meaning you give about the phenomenon of death of the elderly. Through the comprehensive analysis of the testimonies, a medium understanding was opened that is believed to be sufficient for the achievement of the guiding thread of hermeneutics: The sense of care of nurses in the face of the phenomenon of death in the elderly. As results and conclusions the nursing team demonstrated fragilities inherent in cultural fears about death. However, they did not depart from the technicity and love that the science of care excels

Se trata de una disertación de maestría que objetiva desvelar el sentido del cuidado del equipo de enfermería ante el fenómeno de la muerte en ancianos teniendo como referencia teórico-metodológica la fenomenología de Heidegger. Como participantes de la investigación tendrán enfermeros y técnicos de Enfermería con la vivencia del cuidado en ancianos. Además de respetar los aspectos éticos y legales que constan en la Resolución 466/12 del Consejo Nacional de Salud, esta investigación obtuvo aprobación en el Comité de ética en Investigación del Hospital Universitario (CAAE: 62132016.1.0000.5243). El escenario de estudio fue realizado en un hospital universitario, teniendo como técnica de recolección de datos la entrevista fenomenológica, siendo mediada por una cuestión orientadora: Hable del sentido que usted dona acerca del fenómeno de la muerte de ancianos. Por el análisis comprensivo de los testimonios, se abrió una comprensión mediana que se cree suficiente para la conquista del hilo conductor de la hermenéutica: El sentido del cuidado de los enfermeros ante el fenómeno de la muerte en ancianos. Como resultados y conclusiones el equipo de enfermería demostró fragilidades inherentes a los miedos culturales sobre la muerte. Sin embargo, no se alejaron de la tecnicidad y amorosidad que la ciencia del cuidado prima