Key elements and checklist of shared decision-making conversation on life-sustaining treatment in emergency: a multispecialty study from China / 世界急诊医学杂志（英文）

@#BACKGROUND: Shared decision-making (SDM) has broad application in emergencies. Most published studies have focused on SDM for a certain disease or expert opinions on future research gaps without revealing the full picture or detailed guidance for clinical practice. This study is to investigate the optimal application of SDM to guide life-sustaining treatment (LST) in emergencies. METHODS: This study was a prospective two-round Delphi consensus-seeking survey among multiple stakeholders at the China Consortium of Elite Teaching Hospitals for Residency Education. Participants were identified based on their expertise in medicine, law, administration, medical education, or patient advocacy. All individual items and questions in the questionnaire were scored using a 5-point Likert scale, with responses ranging from “very unimportant” (a score of 1) to “extremely important” (a score of 5). The percentages of the responses that had scores of 4-5 on the 5-point Likert scale were calculated. A Kendall’s W coefficient was calculated to evaluate the consensus of experts. RESULTS: A two-level framework consisting of 4 domains and 22 items as well as a ready-to-use checklist for the informed consent process for LST was established. An acceptable Kendall’s W coefficient was achieved. CONCLUSION: A consensus-based framework supporting SDM during LST in an emergency department can inform the implementation of guidelines for clinical interventions, research studies, medical education, and policy initiatives.

Barriers to Informed refusal in Korea / Obstáculos al rechazo informado en Corea / Barreiras à recusa informada na Coreia

Abstract In South Korea, the legal and cultural environment keeps terminally ill patients from making an informed refusal to a treatment the discontinuation of which can cause death. Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life allows several forms of informed refusal, but it is not enough. There is no explicit guarantee, at least under this law, of the right to refuse a treatment given during a period that has not reached an end-of-life process prescribed in the law. Dori, which the family of a terminal patient feels obligated to follow, makes them commit to doing what they believe is right as a family member without asking the patient's intention. Because it reduces the family's motivation to have a difficult talk about death and end-of-life with the patient, the patient is deprived of an opportunity to make a decision based on accurate information. In making a decision for the patient while patient is excluded, the family often ends up choosing a safe decision that puts physical survival first. In conclusion, the culture and the culturally influenced law are making it impractical for terminal patients to make an informed refusal.

Resumen: En Corea del Sur, el entorno legal y cultural impide a los pacientes terminales rechazar con conocimiento de causa un tratamiento cuya interrupción puede causar la muerte. La Ley de Decisiones sobre el Tratamiento de Mantenimiento de la Vida para Pacientes en Hospicio y Cuidados Paliativos o al Final de la Vida permite varias formas de rechazo informado, pero no es suficiente. No se garantiza explícitamente, al menos en esta ley, el derecho a rechazar un tratamiento administrado durante un periodo que no ha llegado a un proceso de final de vida prescrito en la ley. La ley Dori, que la familia de un paciente terminal se siente obligada a seguir, les hace comprometerse a hacer lo que creen correcto como familiares, sin preguntar la intención del paciente. Dado que reduce la motivación de la familia para tener una charla difícil sobre la muerte y el final de la vida con el paciente, éste se ve privado de la oportunidad de tomar una decisión basada en información precisa. Al tomar una decisión por el paciente mientras se le excluye, la familia suele acabar eligiendo una decisión segura que antepone la supervivencia física. En conclusión, la ley, influenciada por la cultura, está haciendo que sea poco práctico para los pacientes terminales hacer un rechazo informado.

Resumo Na Coreia do Sul, o ambiente legal e cultural mantém pacientes com doença terminal à parte de fazer uma recusa informada a um tratamento cuja descontinuação pode causar morte. O Ato sobre Decisões a respeito de Tratamento de Suporte à Vida para Pacientes em Lares de Idosos e Cuidados Paliativos ou ao Fim da Vida permite diversas formas de recusa informada mas não é suficiente. Não há uma garantia explícita, pelo menos sob esta lei, do direito de recusar um dado tratamento durante um período que não alcançou um processo de fim-da-vida prescrito na lei. Dori, que a família de um paciente terminal sente-se obrigada a seguir, faz com que eles se comprometam a fazer o que eles acreditam ser certo como um membro da família, sem perguntar a intenção do paciente. Na medida em que isto reduz a motivação da família em ter uma conversa difícil sobre morte e fim-da-vida com o paciente, o paciente é privado de uma oportunidade de tomar uma decisão baseada em informação precisa. Ao tomar uma decisão pelo paciente enquanto ele é excluído, a família frequentemente termina escolhendo uma decisão segura que coloca a sobrevivência física em primeiro lugar. Em conclusão, a cultura e a lei influenciada pela cultura estão tornando impraticável para pacientes terminais fazer uma recusa informada.

Challenges and Opportunities in Clinical Ethics with the Implementation of Korea's End-of-Life Act / Desafíos y oportunidades en ética clínica con la implementación de la Ley de fin de vida de Corea / Desafios e oportunidades em ética clínica com a implementação do Ato de Fim-da-Vida na Córeia

Abstract: This paper examines the possible impacts of the Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life in Korea (Korea's end-of-life act), legislated in 2016, on the development of hospital ethics committees and clinical ethics consultation services in South Korea. Clinical ethics in Korea has not made much progress in comparison to other subdisciplines of biomedical ethics. While the enactment of this law may give rise to beneficial clinical ethics services, it is possible that customary practices and traditional authorities in Korean society will come into conflict with the norms of clinical ethics. This paper examines how the three main agents of Korean society—family, government, and medical professionals—may clash with end-of-life stage norms in clinical ethics, thus posing obstacles to the development of hospital committees and consultation services. A brief outline of what lies ahead for the progress of clinical ethics practice is explored.

Resumen: Este documento examina los posibles impactos de la Ley de decisiones sobre el tratamiento de soporte vital para pacientes en hospicios y cuidados paliativos, o al final de la vida en Corea (Ley de Corea del Final de la Vida), legislada en 2016, sobre el desarrollo de comités de ética hospitalaria y servicios de consulta de ética clínica en Corea del Sur. La ética clínica en Corea no ha avanzado mucho en comparación con otras subdisciplinas de la ética biomédica. Si bien la promulgación de esta ley puede dar lugar a servicios de ética clínica beneficiosos, es posible que las prácticas tradicionales y las autoridades tradicionales en la sociedad coreana entren en conflicto con las normas de ética clínica. Este documento examina cómo los tres agentes principales de la sociedad coreana —familia, gobierno y profesionales médicos— pueden chocar con las normas de ética clínica al final de la vida, lo que plantea obstáculos para el desarrollo de comités hospitalarios y servicios de consulta. Se explora un breve resumen de lo que queda por delante para el progreso de la práctica de la ética clínica.

Resumo: Este artigo examina os possíveis impactos que o Ato sobre Decisões Relacionadas a Tratamento de Manutenção da Vida para Pacientes em Casas de Idosos e de Cuidados Paliativos ou ao Fim da Vida na Coréia (ato de fim da vida da Coréia), aprovado pelo legislativo em 2016, sobre o desenvolvimento de comitês de ética de hospitais e serviços de consulta sobre ética clínica na Coréia do Sul. Ética clínica na Coréia não sofreu muito progresso em comparação com outras subdisciplinas da ética biomédica. Enquanto a promulgação desta lei pode dar origem a serviços de ética clínica proveitosos, é possível que práticas usuais e autoridades tradicionais na sociedade coreana entrarão em conflito com as normas da ética clínica. Este artigo examina como os três principais agentes da sociedade coreana - família, governo e profissionais médicos - podem se chocar com normas de estágios de fim da vida em ética clínica, colocando assim obstáculos para o desenvolvimento de comitês hospitalares e serviços de consulta. Um breve esboço do que vem pela frente para o progresso da prática de ética clínica é explorado.

Feasibility Study of Physician Orders for Life-Sustaining Treatment for Patients with Terminal Cancer / Journal of the Korean Cancer Association, 대한암학회지

PURPOSE: Physician Orders for Life-Sustaining Treatment (POLST) form is a legal document for terminally ill patients to make medical decisions with physicians near the end-of-life. A multicenter prospective study was conducted to evaluate the feasibility of POLST administration in actual oncological practice. MATERIALS AND METHODS: Patients with terminal cancer, age ≥ 20 years, and capable of communicating were eligible. The primary endpoint was the completion rate of POLST. Data about physicians' or patients' barriers were also collected. RESULTS: From June to December 2017, 336 patients from seven hospitals were eligible. Median patient age was 66 years (range, 20 to 94 years); 52.7% were male; and 60.4% had poor performance status. Primary cancer sites were hepato-pancreato-biliary (26.2%), lung (23.2%), and gastrointestinal (19.9%). Expected survival duration was 10.6±7.3 weeks, with 41.2% receiving hospice care, 37.9% showing progression after cancer treatment, and the remaining patients were under active treatment (15.8%) or initially diagnosed with terminal cancer (5.1%). POLST forms were introduced to 60.1% of patients, and 31.3% signed the form. Physicians' barriers were reluctance of family (49.7%), lack of rapport (44.8%), patients' denial of prognosis (34.3%), lack of time (22.7%), guilty feelings (21.5%), and uncertainty about either prognosis (21.0%) or the right time to discuss POLST (16.6%). The patients' barriers were the lack of knowledge/understanding of POLST (65.1%), emotional discomfort (63.5%), difficulty in decision-making (66.7%), or denial of prognosis (14.3%). CONCLUSION: One-third of patients completed POLST forms, and various barriers were identified. To overcome such barriers, social engagement, education, and systematic support might be necessary.

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

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

Comparison of Life-Sustaining Treatment in Terminal Cancer Patients between a Cancer and Hospice Unit after Do-Not-Resuscitate Orders

PURPOSE: The purpose of this study was to compare the differences in the performance of life-sustaining treatment after signing a do-not-resuscitate (DNR) order between terminal cancer patients who died in the cancer unit and hospice unit. METHODS: We performed a retrospective analysis of 174 patients who died in the cancer unit (CU) and 68 patients who died in the hospice unit (HU) from January 1, 2016 to December 31, 2016 at a hospital specializing in cancer treatment. RESULTS: The rate of life-sustaining treatment administration was lower for patients who died in the HU than that of those who died in the CU. The period until death after signing a DNR order was 7 days for CU patients and 19.5 days for the HU patients. The period from admission to death was also significantly longer in HU patients (32.5 days) than that in CU patients (21.5 days, p < .001). Of the patients who died in the CU, 54% were referred to the HU but did not use the service. Most of the people who signed DNR informed consents were spouses and offspring; only 4.6% of patients signed DNRs. CONCLUSION: It is hard to say that life-sustaining treatment increases the survival period, but it can improve symptom control and quality of life in hospices. Activation of consultation-based hospice is necessary for patients who cannot use the hospice unit. To increase patient's active participation in the life-sustaining treatment decision of terminal cancer patients, it is necessary that an advanced practice nurse specialized in counseling and education is involved in the decision.

Critical Care Nurses' Perception of Life-sustaining Treatment at End of Life: A Content Analysis / 중환자간호학회지

PURPOSE: The purpose of this study was to describe what critical care nurses perceived about life-sustaining treatment at end of life.METHODS: A qualitative content analysis method was utilized. The unit of analysis was interview text obtained from fifty critical care nurses of a general hospital.RESULTS: Seven categories in two content areas were abstracted. In the negative perception area, the following five categories were abstracted: patients' suffering, dying with damaged dignity, patients' isolation from family members, regret about choosing life-sustaining treatment, and family members' burden. In the positive perception area, the following two categories were abstracted: willingness to sustain life and duty as family members.CONCLUSIONS: Nurses have better competencies pertaining to understanding patients' responses and suffering than any other health care professions do. Nurses should play an important role in advocating for patients and their family in the process of end-of-life care decision making.

Limitación del esfuerzo terapéutico en cuidados intensivos pediátricos: conocimiento y actitudes bioéticas del profesional médico / Limitation of therapeutic effort in Paediatric Intensive Care Units: bioethical knowledge and attitudes of the medical profession

Los cuidados intensivos pediátricos son una especialidad nueva, con importantes avances tecnológicos que pueden prolongar el proceso de morir. Uno de los problemas bioéticos frecuentes es la limitación del esfuerzo terapéutico, que es la adecuación y/o proporcionalidad del tratamiento tratando de evitar obstinación y futilidad. OBJETIVO Conocer la experiencia de médicos que trabajan en unidades de cuidado intensivo (UCIP) ante decisiones ético-clínicas. SUJETOS Y MÉTODO Estudio observacional, descriptivo y transversal, aplicando una encuesta anónima a médicos de UCIP, solicitando datos sobre problemas éticos que se generan en la atención al niño crítico y su procedimiento de resolución. Aprobado por el Comité de Ética de la Investigación de la Facultad de Medicina de la Universidad del Desarrollo-Clínica Alemana. RESULTADOS Respondieron 126 médicos de 34 UCIP de Chile. El 98,41% ha tomado decisiones de limitación terapéutica. El tipo de limitación más frecuente mencionado fue la orden de no reanimar (n = 119), seguido por la no instauración de medicamentos (n = 113), limitación de ingreso a UCIP (n = 81), siendo la menos mencionada la retirada de tratamientos (n = 81). El 34,13% consideró que existían diferencias éticas entre no instaurar o retirar un determinado tratamiento. CONCLUSIONES Los dilemas ético-clínicos son comunes en la UCIP, siendo frecuentes las decisiones de limitación terapéutica. Muchos médicos reconocen no poseer conocimientos en ética clínica y necesitar formación continua en bioética.

Paediatric intensive care is a relatively new specialty, with significant technological advances that lead to the prolongation of the dying process. One of the most common bioethical problems is limitation of treatment, which is the adequacy and/or proportionality treatment, trying to avoid obstinacy and futility. OBJECTIVE To determine the experience of physicians working in Paediatric Intensive Care Units (PICU) when faced with bioethical decisions. SUBJECTS AND METHOD An observational, descriptive and cross-sectional study was conducted using an anonymous questionnaire sent to physicians working in PICU. The data requested was related to potential ethical problems generated in the care of the critical child, and the procedure for their resolution. The study was approved by the Ethics Research Committee of the Faculty of Medicine UDD CAS. RESULTS A total of 126 completed questionnaires were received from physicians working in 34 PICU in Chile. Almost all (98.41%) of them acknowledged having taken therapeutic limitation decisions (TLD). The most common type of TLD mentioned was the Do Not Resuscitate order (n = 119), followed by the establishment of no medications (n = 113), limited admission to PICU (n = 81), with the withdrawal of treatment being the least mentioned (n = 81). Around one-third (34.13%) felt that there were no ethical difference between introducing or removing certain treatments. CONCLUSIONS Bioethical dilemmas are common in the PICU, with therapeutic limitation decisions being frequent. Many recognise not having expertise in clinical ethics, and they need continuing education in bioethics.

Elderly people's thoughts about surrogate decision making in end-of-life care : Increasing trust through communication in the primary care / 日本プライマリ・ケア連合学会誌

<b>Introduction</b> : The purpose of this study was to approach issues related to end-of-life care by investigating elderly people's own thoughts about surrogate decision making by family members.<br><b>Methods</b> : Semi-structured interviews were carried out with 30 elderly people 60 years of age and older to determine whether or not they trust in surrogate decision making by their family members, and to examine the reasons for their thoughts. Each of the respondents' statements were categorized by level of confidence, and their reasons were analyzed.<br><b>Results</b> : Respondents were divided into two main groups : a “trusting” group and an “anxious” group. Seventy percent of respondents were in the “trusting” group. In both groups, the most common reason given was related to the desire to directly communicate one's wishes to one's surrogates. Following that, in the “trusting group”, the main reasons were related to the thoughts of the interviewee and the characteristics of the surrogates. In the “anxious group”, the main reasons were issues of end-of-life care related to the feelings of surrogates, the attitude of medical staff, and other background factors.<br><b>Conclusion</b> : To resolve issues of surrogate decision making related to end-of-life care, it is important in primary care practice to provide encouragement and support to elderly people to allow them to clearly communicate their wishes. We recommend further study and ethical discussion about end-of-life care to establish appropriate legal and institutional frameworks.

Problemas ético del retiro o limitación de traamiento vital en unidades de cuuidados intensivos / Ethic problems bbout retirement or limitation of life-sustainin treatment in iintensive care units / Problemas étios do retiro ou limitação de tratamento vital em unidades de terapia intensiva

La medicina crítica atraviesa sus mejores momentos. Como afirma Gracia, "los cuidados intensivos han alcanzado su mayoría de edad". Nadie cuestiona dichos adelantos para pacientes que eran considerados hace relativamente poco como desahuciados. Sin embargo, también da algo de vértigo el cambio que se ha logrado en el manejo de la muerte de dichos pacientes: el tránsito de una muerte "natural" a una muerte "gobernada por el hombre". En este contexto cobran nuevo sentido conceptos como eutanasia, distanasia, futilidad, calidad de vida, muerte digna y, de manera especial, el concepto de retiro o limitación de tratamiento vital (LET). El presente artículo de reflexión analiza los problemas éticos que se generan al implementar los protocolos de LET en las unidades de cuidados intensivos (UCI). El artículo está dividido en cuatro partes: 1. Distinciones terminológicas; 2. formas de aplicación de la LET; 3. LET en casos especiales: pediatría y personas con discapacidad, y 4. los problemas éticos específicos de la LET.

Intensive Care Medicine experiences its best time. As Gracia says, "intensive care has come of age." Nobody questions such advances for patients that were considered hopeless days ago. However, it also gives some dizzying the change that has been made in the death management of such patients: the transition from a "natural" death to death "ruled by man." In this context, concepts take on new meaning as euthanasia, dysthanasia, futility, quality of life, dying with dignity and especially, the concept of retirement or limitation of life-sustaining treatment. This article discusses the ethical problems generated by implementing the limitations of life-sustaining treatment protocols in Intensive Care Units. The article is divided into 4 parts: 1. Terminological distinctions. 2. How to apply the limitation of life-sustaining treatment. 3. Limitation of life-sustaining treatment in special cases: pediatrics and disability. 4. The specific ethical problems of limitation of life-sustaining treatment.

A medicina crítica atravessa seus melhores momentos. Como Gracia diz: "os cuidados intensivos alcançaram a maioria de idade." Ninguém questiona tais avanços para os pacientes que foram consideradas até a pouco tempo como desauciados. No entanto, da um pouco de vertigem a mudança que tem-se alcançado na gestão da morte desses pacientes: a transição de uma morte "natural" à morte «governada pelo homem". Neste contexto, cobram novo sentido conceitos como eutanásia, distanásia, futilidade, qualidade de vida, morte digna e, em particular, o conceito de retiro ou limitação de tratamento vital (LET). O presente artigo de reflexão faz a análise dos problemas éticos gerados pela implementação de protocolos de LET nas unidades de terapia intensiva (UTI). O artigo está dividido em quatro partes: 1. Distinções terminológicas; 2. Formas de aplicação do LET; 3. LET em casos especiais: pediatria e pessoas com deficiência e, 4. Os problemas éticos explícitos da LET.

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".

End-of-life Decision in Korea

There are more than 65,000 cancer deaths per year in Korea. To what extent should we continue aggressive treatment in terminal patients? In the course of clinical care of a critically ill patient it may become clear that the patient is inevitably dying, the goal of medical treatment should not be to prolong the dying process without benefit to the patient or to others. Further intervention which will do no more than prolong the active dying process is often described as "futile." Even though hospice is widely accepted in Korea, there is still controversy about withholding or withdrawing life-sustaining treatment. Conflicts between the parties may interrupt satisfactory decision-making and adversely affect patient care, family satisfaction, and physicianclinical team functioning. When further intervention to prolong the life of a patient becomes futile, physicians have an obligation to shift the intent of care toward comfort and closure. However, there are necessary value judgments involved in coming to the assessment of futility. In this context, Korean society needs consensus agreement on futility issue, based on our own social values.

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.