The Interpretation of "Expert Consensus on Legal Issues Related to End-of-life Decision Making" / 中国医学伦理学

In recent years, the issue of end-of-life decision making has received broad attention. More and more people have been appealing for the respect for terminal patients’ wishes in decision making. Many scholars have proposed the application of advance medical decision to ensure the autonomy of terminally ill patients. Given that advance medical decision does not have legal effect in China, the Beijing Health Law Society proposed the "Expert Consensus on Legal Issues Related to End-of-life Decision Making" in July 2022. This consensus provides clear guidance on how to make medical decisions for terminally ill patients, based on the principle of respecting the patient’s wishes within the framework of current laws and regulations. The consensus aims to provide guidance for both doctors and patients about how to respect patients’ own wishes and protect their autonomy, as well as to provide reference for future law and policy formulation on related issues.

Comunicación médico-paciente en enfermos de cáncer en etapa terminal: una visión desde la experiencia de los familiares / Doctor-Patient Communication in End-Stage Cancer Patients: a View From the Experience of Family / Comunicação médico-paciente em pacientes com câncer em estágio terminal: uma perspectiva a partir da experiência de familiares

Resumen: Uno de los elementos prioritarios en la ética médica es la relación médico-paciente. La comunicación es fundamental para que los enfermos y sus familiares puedan tomar decisiones al final de la vida. El objetivo del artículo es conocer, a partir de la experiencia de los familiares de los enfermos de cáncer en etapa terminal, la información oportuna que proporciona el médico sobre el pronóstico y las condiciones del enfermo para tomar decisiones que alivien las molestias o el sufrimiento. Se llevó a cabo un estudio cualitativo que parte del paradigma hermenéutico fenomenológico, el cual permite conocer la percepción que tienen las personas del mundo en el cual viven y el significado que le dan. Se entrevistó a once familiares y cuidadores primarios y se utilizó el análisis temático y el método de van Manen. La experiencia de los familiares muestra que algunos enfermos no recibieron información acerca de su condición y pronóstico. Se puede concluir que algunos de los médicos necesitan capacitación mediante reuniones en donde un profesional de la salud mental dirija sesiones sobre las emociones para afrontar situaciones relacionadas con la muerte y manejar la angustia.

Summary: One of the priority elements in medical ethics is the physician-patient relationship. Communication is essential so patients and their families can make decisions at the end of life. The main aim of this article is to be aware, from the experience of patients with terminal cancer relatives, the timely information provided by the physician about the prognosis and conditions of the patient to make decisions that alleviate discomfort or suffering. A qualitative study was carried out starting from the phenomenological hermeneutic paradigm, which allows us to know the perception people have of the world in which they live and the meaning they give it. Eleven family members and primary caregivers were interviewed using the van Manen's thematic analysis and method. The experience of family members shows that some patients did not receive information about their condition and prognosis. It can be concluded that some of the physicians need training through meetings where a mental health professional leads sessions on emotions to cope with situations related to death and manage distress.

Resumo: Um dos elementos prioritários da ética médica é a relação médico-paciente. A comunicação é essencial para que os pacientes e suas famílias tomem decisões no final da vida. O objetivo deste artigo é conhecer, a partir da experiência de familiares de pacientes com câncer em estágio terminal, as informações oportunas fornecidas pelo médico sobre o prognóstico e as condições do paciente para que decisões que aliviem o desconforto ou o sofrimento possam ser tomadas. Foi reali -zado um estudo qualitativo baseado no paradigma hermenêutico fenomenológico, que nos permite conhecer a percepção que as pessoas têm do mundo em que vivem e o significado que elas dão a ele. Onze familiares e cuidadores primários foram entrevistados e a análise temática e o método de van Manen foram utilizados. A experiência dos familiares mostra que alguns pacientes não receberam informações sobre sua condição e prognóstico. Pode-se concluir que alguns médicos precisam de treinamento por meio de reuniões em que um profissional de saúde mental realize sessões sobre emoções para lidar com situações relacionadas à morte e a como lidar com a angústia.

Conocimiento sobre consentimiento informado en docentes, estudiantes y pacientes de la carrera de odontología / Knowledge on informed consent in teachers, students and patients of the faculty of dentistry

Determinar el nivel de conocimiento respecto al procedimiento de consentimiento informado que presenta una muestra de docentes, estudiantes y pacientes odontológicos. Se aplicó un cuestionario anónimo a 271 estudiantes, 58 docentes y 260 pacientes de una Clínica Odontológica Universitaria. El análisis de datos se realizó aplicando el test chi-cuadrado. Los estudiantes, en su mayoría, presentan un conocimiento alto sobre CI. Un 60,61 % de los docentes muestran un grado de conocimiento regular y un 39,39 % presenta conocimiento alto. Los pacientes, en su mayoría, presentan un conocimiento regular (58,41 %). Es importante aumentar la investigación del tema y la formación continua que introduzca conocimientos sobre autonomía del paciente. De esta manera, crearemos conciencia en los docentes del área y fortaleceremos el conocimiento de las nuevas generaciones, contribuyendo al cumplimiento de nuestro mandato legal y la contribución al ejercicio pleno del derecho a la autonomía de nuestros pacientes.

The objective of this study was to determine the level of knowledge regarding the Informed Consent procedure presented in a sample of teachers, students and dental patients. An anonymous questionnaire was applied to 271 students, 58 teachers and 260 patients of a Teaching Dental Clinic. The data analysis was performed by applying the chi-square test. The majority of the students have a high knowledge. 60.61 % of the teachers show a level of regular knowledge and 39.39 % show a high knowledge. Most of the patients show a regular knowledge (58.41 %). It is important to increase both the research of the subject and the continuous training that introduces knowledge about patient autonomy. In this way, we will raise awareness among teachers in the area and strengthen the knowledge of new generations, contributing our legal mandate and the full exercise of the right to autonomy of our patients.

Comparative Study on the Valid Decision Mode of the Living Will / 中国医学伦理学

In the discussion on the establishment of the system of living will in China, the major controversy is whether the living will made by patients in medical treatment is valid. Different countries and regions have different decision-making modes for the validity of living will, which are mainly divided into patient-independent decision-making mode, physician based decision-making mode and family-based decision-making mode. On the basis of drawing lessons from international experience and combining with national conditions, this paper made a comparative analysis of the decision-making modes of the validity of living will. It is believed that the legislation of the decision-making of living will, which suits China's national conditions, should give priority to appointing agents from family members, consolidate the validity of living will through pre-consultation procedure, and confirming their rationality and legitimacy through legal custody and periodic review. In terms of legislative steps, it is suggested that non-legislative forms can be promoted first, and then incorporated it into legislation when conditions are ripe.

Aspectos bioéticos y jurídicos del acompañamiento en la ley chilena de interrupción voluntaria del embarazo en tres causales / Bioethical and legal aspects of abortion counseling under Chilean law / Aspectos bioéticos e jurídicos do acompanhamento da lei chilena de interrupção voluntária da gravidez em três causas

La ley que regula la despenalización de la interrupción voluntaria del embarazo en tres causales contempla un programa de acompañamiento que garantiza el derecho a la autonomía de la paciente. En la práctica, sin embargo, no todos los modelos de acompañamiento que se ofrecen en Chile cumplen con este estándar normativo. El artículo analiza el acompañamiento desde las perspectivas jurídicas y bioética, y explora las características que debiera tener un programa de acompañamiento respetuoso de la autonomía de la mujer embarazada. El texto concluye afirmando que el profesional de salud que ofrece acompañamiento debe involucrarse en un diálogo respetuoso y genuino con la paciente, proveer información adecuada, abstenerse de imponer su propia interpretación sobre la experiencia de la mujer, apoyarla en su deliberación y asumir que las preferencias y valores de la mujer deben guiar el proceso de toma de decisiones. Los programas que no cumplen con estos estándares pueden estar infringiendo obligaciones legales.

The Chilean statute decriminalizing abortion under three specific grounds provides for a counseling program which guarantees patient's autonomy. However, the reality is that not all counseling programs that are offered in Chile comply with this normative standard. The article analyzes abortion counseling from a legal and bioethical perspective, and examines the features of a counseling program respectful of the pregnant woman's autonomy. The text concludes stating that the health care professional that offers support he/she should be involved in a respectful and genuine dialogue with the patient, provide adequate information, refraining from imposing his/her own interpretation about the experience of the woman, support her in deliberating and assume that her preferences and values must guide the process of decision making. The programs which do not fulfill these standards may be contravening legal obligations.

A lei que regula a descriminalização da interrupção voluntária de gravidez em três causal inclui um programa de acompanhamento que garante o direito à autonomia do paciente. Na prática, no entanto, nem todos os modelos de acompanhamentos oferecidos no Chile cumprem com esse padrão normativo. O artigo analisa o acompanhamento com base nas perspectivas jurídicas e bioética e explora as características que devem ter um programa de apoio respeitoso da autonomia da mulher grávida. O texto conclui afirmando que o profissional de saúde que fornece acompanhamento deve estabelecer um diálogo genuíno e respeitoso com a paciente, fornecer informações adequadas, abster-se de impor sua própria interpretação sobre a experiência da mulher, apoiá-la em sua deliberação e assumir que as preferências e os valores da mulher devem orientar o processo de tomada de decisão. Os programas que não cumpram com estas normas podem estar infringindo obrigações legais.

La eutanasia en Colombia desde una perspectiva bioética / Euthanasia in Colombia from a bioethical perspective

La eutanasia es la terminación voluntaria de la vida de una persona que padece una enfermedad terminal, pudiendo aplicarse de forma activa o pasiva, así como de forma voluntaria o involuntaria. Este procedimiento debe ser visto desde la perspectiva del paciente, priorizando su autonomía y libertad en la toma de decisiones con respecto a su enfermedad y a la solicitud de una muerte digna. En Colombia, la Corte Constitucional, despenalizó la eutanasia en 1997, creando la opción para que las personas que sufren una enfermedad incurable y en fase terminal puedan pedir poner fin a su vida; sin embargo el Congreso de la República, en 18 años no realizó su reglamentación, por lo que la Corte en el 2014, le ordenó al Ministerio de Salud y Protección Social que creara una ruta administrativa para efectuar la regulación, formando así un comité para atender las solicitudes de eutanasia activa y presentando los lineamientos generales para hacer efectivo el derecho a morir con dignidad, del paciente en fase terminal. De este modo, Colombia se convierte en el primer país en desarrollo en legalizar la eutanasia activa, aunque algunos conceptos quedaron incompletos en la resolución del Ministerio de Salud, proponiendo de este modo que se continúe la discusión con expertos que asegure que las prácticas en salud recomendadas, cumplan con los términos señalados por la Corte Constitucional.

Euthanasia is the voluntary termination of a person life that suffers a terminalillness; it can be applied actively or passively, as well as voluntary or involuntary.This procedure must be viewed from the perspective of the patient, prioritizingtheir autonomy and freedom in making decisions about their disease andthe application of a dignified death. In Colombia, the Constitutional Court,legalized euthanasia in 1997, creating the option for people suffering anincurable and terminally ill, can seek to end their life; however the Congress,in 18 years failed to conduct its regulations, so the Court in 2014 ordered theMinistry of Health and Social Protection to create an administrative route tomake the adjustment, thus forming a committee to meet active euthanasiarequests and presenting the general guidelines for implementing the right todie with dignity on terminally ill patients. Thus, Colombia became the firstdeveloping country to legalize active euthanasia, although some conceptswere incomplete in the resolution of the Ministry of Health, thus suggestingthat the discussion with experts will continue to ensure that health practicesrecommended comply with the terms stated by the Constitutional Court.

Aspectos bioético-jurídicos de las instrucciones previas o testamento vital en el contexto normativo español / Bioethical and legal issues of advance directives or living wills in the context of Spain / Aspectos bioético-jurídicos das instruções prévias ou testamento vital no contexto normativo espanhol

La discrepancia que genera la institución de las instrucciones previas se aprecia en distintos niveles -ético, jurídico social-, y alcanza incluso al ámbito terminológico, esto es, los términos empleados para referirse a esta institución no son en absoluto pacíficos o unívocos: desde testamentos vitales, voluntades o directivas anticipadas, deseos expresados anteriormente, etc., lo que lleva a cierta confusión sobre si se trata o no de la misma figura y a cierta inseguridad jurídica, ámbito por cierto sumamente prolijo en este sentido. No obstante la abundante legislación y doctrina sobre el particular, existe poca información acerca de la forma de registrar el documento, la posibilidad de consultarlo o los límites para su cumplimiento. Este artículo trata de ofrecer mayor luz al respecto, en el seno de la normativa española.

The discrepancy generated by advanced directives is observed in several levels -ethical, legal and social-, and reaches even the terminological field, that is, the terms employed to refer to the issue are not distinct or indifferent at all: from living will to advanced directives to wishes previously expressed, etc., which confers some confusion about whether it refers to the same issue or to some legal insecurity, field otherwise very complex in this sense. In spite of the abundant legislation and doctrine about the issue, there is little information about the way to register the document, the possibility to consult it and the limits about its fulfillment. This article tries to offer more understanding of the issue considering the norms of Spain.

A discrepância que gera a instituição das instruções prévias é apreciada em distintos níveis -ético, jurídico social-, e alcança inclusive o âmbito terminológico, isto é, os termos empregados para se referir a esta instituição não são em absoluto pacíficos ou unívocos: desde testamentos vitais, vontades ou diretivas antecipadas, desejos expressados anteriormente, etc., o que leva a certa confusão sobre se se trata ou não da mesma figura e a certa insegurança jurídica, âmbito por certo sumamente prolixo neste sentido. Não obstante a abundante legislação e doutrina sobre o particular, existe pouca informação acerca da forma de registrar o documento, a possibilidade de consultá-lo ou os limites para seu cumprimento. Este artigo trata de oferecer maior luz a respeito, no seio da normativa espanhola.

Is there a moral difference between killing and letting die in healthcare.

The purpose of this review is to prove that there is no moral difference between killing and letting one die in healthcare. It is important to be aware of the moral equivalence of killing and letting die. The doctor that allows the patient to die without providing life saving measures, and the doctor that administers a lethal injection both have the same outcome. The patient dies in either case. The Abrahamic religions; Islam, Christianity, and Judaism, all argue for the sanctity of life. The world’s major religions; Islam, Christianity, and Judaism all have doctrines concerning the sanctity of life; and they support the main arguments of this study that there is no moral difference between killing and letting die. In relation to patient autonomy and the patient's right to die, it is very important to highlight that doctors have a moral and legal responsibility to save lives. In addition, we discuss the distinction centres on the true definition of patient autonomy, and who is responsible for defining the “quality” of life. The intention and foresight are critical points that support the thesis statement that killing and letting one die are one in the same. Intention is the intentional killing of a human being, however, the when one refers to foreseen, it brings to mind images of a doctor and a patient’s family that is taking into consideration the entire different variables that they must deal with in order to decide whether or not to terminate life sustaining measures. They are trying to foresee what type of life the patient will have if life prolonging treatment is withdrawn. The acts and omissions doctrine as described in this review shows that there is no moral difference to kill a person or to let him die. The end result is the same, and someone is dead. Finally, we extensively discussed the various viewpoints regarding whether or not there is a moral difference between killing and letting die. The evidence reveals that there is no moral difference between the two. There is no doubt that the debate over killing and letting die will continue for years to come. It is critical that the issue be addressed at this particular time in history with the advent of modern medical technology.

Shortcomings and Inadequacies of Autonomy Argument for Euthanasia.

Abstract: Patient autonomy has a critical role in making decisions in medical practice and it is accepted by international conventions on health care and various national medical codes. However, pertaining to terminally ill patients, this right becomes very problematic in regards to end of life decisions. Utilitarian ethicists motivated by materialistic worldview and individualism have made patient autonomy based arguments for the permissibility of active euthanasia. An appraisal of pro-euthanasia arguments that include the best interest, golden rule, and autonomy is made in this paper. The best interest and golden rule arguments are based on subjective moral judgment thus failing the universalization test. The argument from autonomy is unconvincing because of the confounded autonomy of the terminally ill patients.

Autonomia da vontade do paciente X autonomia profissional do médico / Pacient's autonomy vs physician's professional autonomy

: A evolução da biotecnociência e da biotecnologia, aliada a novos preceitos jurídicos tuteladores da pessoa humana, tem repercussão direta e imediata na relação médico-paciente. Tanto é que o Código de Ética Médica, com nova roupagem, introduziu mecanismos compatíveis com relação às tutelas constitucionais e civis que abrigam o paciente, tendo como metas a realidade atual. A condição de paciente já não corresponde mais ao paternalismo e ao assistencialismo que lhe era inerente. Ao contrário, apresenta-se munida de uma nova engrenagem com o foco voltado para a autonomia da vontade, dando ao paciente a oportunidade de se manifestar a respeito da aceitação ou da recusa de determinado procedimento médico. É, na realidade, um sujeito de direito, com toda a carga jurídica compreendida na expressão. Surge, dessa forma, como corolário do principium individuationis e recebe o assentimento da própria Bioética, que erigiu a autonomia da vontade do paciente como um dos princípios basilares.

The evolution of biotechnoscience and biotechnology, together with new tutelary legal precepts of the human being, brings direct and immediate impact on the doctor-patient relationship. As matter of fact, the Code of Ethics, with a new appearance, added compatible mechanisms regarding the constitutional and civilian guidance of the patient, according to the present reality. The patient’s condition no longer corresponds to paternalism and welfarism that was relevant. However, the patient is provided with a new mechanism focused on the principle of freedom of choice, allowing them the opportunity to speak about the acceptance or rejection of a particular medical procedure. It is in fact, the subject of law, with all legal burdens properly understood. Emerges, thus, as a corollary of the principium individuationis and receives the approval of bioethics, which established the autonomy of the freedom of choice of the patients as one of the essential principles.

Patient Autonomy and Advance Directives in Korea

There has been a controversy in Korea regarding a 'death with dignity' in comparison to a 'natural death'. However, the issue of patient autonomy is often overlooked. Decision on withholding or withdrawing life-sustaining treatment should be based on the patients' selfdetermination, prefereably in the form of advance directives. Consensus developed by the National Evidence -based Healthcare Collaborating Agency is as follows: (1) a doctor should offer a detailed explanation to patients, including about hospice-palliative care and advance directives, (2) when a terminally ill patient expresses reluctance regarding cardiopulmonary resuscitation or an artificial respirator in advance, such medical actions can be removed, with basic nutrition supply and pain control maintained. However, more discussions should be made in the case of a patient in "persistent vegetative state".

The Medico-Legal and Ethical Problems of Withholding / Withdrawing of Futile Life-Sustaining Mechanical Respirator treatment / 결핵및호흡기질환

The first and the longest criminal indictment case of Korean medico-legal battle, so called BORAMAE Hospital Incident, was finally on its end by Korean Supreme Court's decision on June 24, 2004, after 7 years long legal dispute via Seoul District Court and Seoul Superior Appeal Court's decision. Boramae Hospital case was the first Korean legal case of Withdrawing Life-sustaining treatment of mechanical respirator on 58 years old Extradural Hematoma victim who was on Respirator under Coma after multi-organ failure postoperatively(APACHE II score: 34-39). Two physicians who have involved patient's care and had helped to make discharge the Near-death patient to home after repeated demand of patient's wife, due to economic reason, were sentenced as homicidal crime. This review article will discuss the following items with the review of US cases, Quinlan(1976), Nancy Cruzan(1990), Barber (1983), Helen Wanglie(1990), Baby K (1994) and Baby L cases, along with Official Statement of ATS and other Academic dignitaries of US and World.: [1] Details of Boramae Hospital incident, medical facts description and legal language of homicidal crime sentence. [2] The medical dispute about the legal misinterpretation of patient's clinical status, regarding the severity of the victim with multi-organs failure on Respirator under coma with least chance of recovery, less than 10% probability. [3] Case study of US, of similar situation. [4] Introduction of ATS official Statement on Withdrawing/ Withholding Life sustaining treatment. [5] Patient Autonomy as basic principle. [6] The procedural formality in Medical practise for keeping the legitimacy. [7] The definition of Medical Futility and its dispute. [8] Dying in Dignity and PAS(Physician Assisted Suicide)/and/or Euthanasia [9] The Korean version of "Dying in Dignity", based on the Supreme Court's decision of Boramae Hospital incident (2004.6.24.) [10] Summary and Author's Note for future prospects.

Possibilidade de manifestação da autonomia do paciente internado em um hospital universitário / Possibility of manifestation of the autonomy of the hospitalized patient in a university hospital

Este trabalho objetivou verificar a possibilidade de manifestação da autonomia, por meio da percepção dos pacientes sobre as ações dispensadas pelos profissionais da saúde, durante o período de internação, em um hospital universitário. O estudo do tipo descritivo, exploratório, correlacional, com abordagem quantitativa, foi realizado com uma amostra de 91 pacientes, internados nas Unidades de Clínica Médica e Clínica Cirúrgica do Hospital Universitário da Universidade de São Paulo. Os dados foram coletados por um instrumento, construído baseado na Escala Likert, constituída de 24 proposições, classificadas em duas categorias, competência e liberdade. O nível de significatividade das inferências produzidas foi 5% e os resultados mostraram que em relação ao grau de escolaridade, houve um predomínio de pacientes do nível fundamental sobre os níveis médio e superior. Quanto à profissão/ocupação o maior número de pacientes do estudo enquadrou-se no nível zero, que correspondeu aos desempregados, do lar, aposentados e estudantes. Verificou-se, também, que houve predomínio de pacientes pertencentes à comunidade Butantã e pacientes com tempo de internação inferior a 15 dias. Quando analisadas as duas categorias, identificou-se uma superioridade do escore médio atribuído à categoria competência sobre o atribuído à categoria liberdade, uma vez que os escores mais elevados foram os referentes à informação e ao esclarecimento. Observou-se, ainda, que pacientes mais idosos tendem a atribuir escores mais baixos à assistência recebida no que tange à liberdade, à competência e à assistência global; enquanto os pacientes com maior grau de escolaridade tendem a atribuir escores mais elevados. Quanto ao tempo de internação, pacientes com menor período, tendem a atribuir escores mais elevados para a categoria liberdade. Os escores para liberdade, competência e global estão correlacionados à unidade de internação, devendo ser ) salientado que esses resultados condizem com as características dos pacientes internados nessas unidades. Quando foi considerado o escore global das 24 proposições, verificou-se um resultado positivo, indicando uma situação favorável para a manifestação da autonomia, mesmo com algumas proposições relacionadas à liberdade terem apresentado escores semelhantes para respostas positivas e negativas e, uma delas, ter apresentado escore predominantemente negativo. Concluiu-se que, apesar do resultado favorável para a manifestação da autonomia, essa questão ainda precisa ser trabalhada, sobretudo, no aspecto atinente à liberdade para decidir.

This study aimed to verify the possibility of manifesting autonomy, based on the patient's perception upon the actions in which health professionals are not necessary during the period they are admitted in a school hospital. This descriptive, exploratory and correlational study with a quantitative approach was carried out with a sample of 91 patients, admitted in the clinical and surgical settings of the Hospital Universitário from USP (HU-USP). The data were collected through an instrument that was developed based on Likert Scale, containing 24 items in two categories, competence and freedom. The level of significance of the inferences produced was 5% and the results showed that with relation to education level, there is a predominance of patients who completed junior high school rather than senior high school and college. With regard to profession/occupation, most of the patients in the study were "0" level, what corresponds to the unemployed, housewife, retired and students. It was also verified a predominance of patients from Butantã community and patients whose admission stay was less than 15 days. When it was analyzed both categories, it was identified a higher medium score attributed to the competence category upon the one attributed to the freedom category, since the highest scores referred to information and elucidation. It was also observed that the elderly tend to attribute lower scores to the care they received relating to freedom, to competence and global assistance as well, whereas the patients with higher education level tend to attribute higher scores. Concerning the admission stay period, patients with shorter period, tend to attribute higher scores to the freedom category. The scores related to freedom, competence and global are correlated with the setting, and it is worth pointing out that these results match the characteristics of the patients admitted in these settings. Analyzing the the global score of the 24 items, it is verified a positive result, indicating a favorable situation in order to the autonomy manifestation occurs, even having some items related to freedom presented similar scores to both positive and negative answers, and one of them, presented a predominately negative scores. Despite the favorable result concerning autonomy manifestation, it was concluded that this issue needs to be better approached, mainly in the aspects concerning freedom to make decision.