Education in the National Transplant Law as an ethical pathway for the construction of the health care value in Colombia / La enseñanza de la Ley Nacional de Trasplante como camino ético para la construcción del valor de la atención en salud en Colombia.

The national transplant law in Colombia, Law 1805 of 2016, modified the Colombian legislation regarding how a person accesses an organ transplant, but above all, it changed the donor figure, establishing the term derived from the presumptive consent right. This term implies a person's hypothetical willingness to be an organ donor as a manifestation of solidarity and charity towards another person in a situation of need and vulnerability concerning his/her health and the dimensions that define it. In the following text, seven moments are considered fundamental facts when constructing a culture about the value of healthcare in the national transplant policy in Colombia.

La Ley Nacional de Trasplantes en Colombia, Ley 1805 de 2016, modificó la legislación colombiana en cuanto a cómo se accede a un trasplante de órganos, pero, sobre todo, cambió la figura de donatario y dispuso el término derivado del derecho del consentimiento presuntivo. Este define la hipotética voluntad de una persona de ser donante de órganos como manifestación de solidaridad y beneficencia con otra persona en situación de necesidad y vulnerabilidad relacionada con su salud y las dimensiones que la definen. En el siguiente texto se presentan siete momentos que se consideran hechos fundamentales en la construcción de una cultura del valor de la atención en salud en la política nacional de trasplantes de Colombia.

La enseñanza de la Ley Nacional de Trasplante como camino ético para la construcción del valor de la atención en salud en Colombia / Education in the National Transplant Law as an ethical pathway for the construction of the health care value in Colombia

Resumen La Ley Nacional de Trasplantes en Colombia, Ley 1805 de 2016, modificó la legislación colombiana en cuanto a cómo se accede a un trasplante de órganos, pero, sobre todo, cambió la figura de donatario y dispuso el término derivado del derecho del consentimiento presuntivo. Este define la hipotética voluntad de una persona de ser donante de órganos como manifestación de solidaridad y beneficencia con otra persona en situación de necesidad y vulnerabilidad relacionada con su salud y las dimensiones que la definen. En el siguiente texto se presentan siete momentos que se consideran hechos fundamentales en la construcción de una cultura del valor de la atención en salud en la política nacional de trasplantes de Colombia.

Abstract The national transplant law in Colombia, Law 1805 of 2016, modified the Colombian legislation regarding how a person accesses an organ transplant, but above all, it changed the donor figure, establishing the term derived from the presumptive consent right. This term implies a person's hypothetical willingness to be an organ donor as a manifestation of solidarity and charity towards another person in a situation of need and vulnerability concerning his/her health and the dimensions that define it. In the following text, seven moments are considered fundamental facts when constructing a culture about the value of healthcare in the national transplant policy in Colombia.

Timely dying in dementia: Use patients' judgments and broaden the concept of suffering.

Patients living with advanced dementia (PLADs) face several challenges to attain the goal of avoiding prolonged dying with severe suffering. One is how to determine when PLADs' current suffering becomes severe enough to cease all life-sustaining treatments, including withdrawing assistance with oral feeding and hydrating, a controversial order. This article broadens the concept of suffering by including suffering that cannot be observed contemporaneously and the suffering of loved ones. Four paradigm shifts operationalize these concepts. During advance care planning, patients can judge which future clinical conditions would cause severe suffering. To decide when to allow patients to die, treating physicians/providers only need to assess if patients have reached patients' previously judged, qualifying conditions. Questions: Will this protocol prevent PLADs' prolonged dying with suffering? Deter early-stage dementia patients from committing preemptive suicide? Sway decision-making surrogates from withholding life-sustaining treatments from patients with middle-stage dementia? Provoke providers' resistance to relinquish their traditional, unilateral authority to determine patients' suffering?

Prevalence of living wills among older adults in Germany.

Background: Living wills regulate medical decisions in emergency situations. Those who create a living will can have it registered voluntarily in the Central Register of Lasting Powers of Attorney. Little is known about the general prevalence of living wills. Methods: The German Ageing Survey is an ongoing, population-representative study. 4,185 people aged 50 and older were surveyed about living wills in 2020/2021. Results: 44.8 % of people aged 50 and older have a living will, women more often than men (50.1 % vs. 39.2 %), older people more often than middle-aged people. Educational differences do not exist. Conclusions: Living wills increase the autonomy in medical emergency situations because the patient's wishes are specified in written form. People of all age groups should inform themselves about the significance of living wills and should seek advice about the contents, for example from the general practitioner or one's own health insurance.

End-of-Life Discussions From the Perspective of Social Care and Healthcare Professionals in Palliative Care.

This study describes the state of end-of-life discussions in Finland. A qualitative descriptive study with thematic interviews was conducted. Data were gathered from palliative care unit nurses, physicians and social workers. Inductive content analysis was used. According to interviewees (n = 33), the state of end-of-life discussion included three main categories. First, optimal end-of-life discussion time included early end-of-life discussion, end-of-life discussion at different phases of severe illness, and flexibility and challenges in scheduling end-of-life discussion. Second, end-of-life discussion initiators included both healthcare professionals and non-healthcare professionals. Third, social care and healthcare professionals' experiences of end-of-life discussion consisted of the importance and challenge of end-of-life discussion, end-of-life communication skills development in multiprofessional care context, and end-of-life communication in multi-cultural care context. The results can be used to justify the need of a national strategy and systematic implementation on Advance Care Planning (ACP), considering the multiprofessional, multicultural and internationalizing operating environment.

[Implementation of a multimodal strategy for information and collection of advance directives in a comprehensive cancer center]. / Mise en place d'une stratégie multimodale d'information et de recueil des directives anticipées dans un Centre de lutte contre le cancer (CLCC).

INTRODUCTION: In France, advance directives (AD) remain unknown and underused by healthcare users and professionals. This is particularly true in oncology. This work was carried out with patients and caregivers of a Comprehensive Cancer Center to improve their appropriation and information. METHODS: The project, built by the Ethics Committee, the Patients Committee and the Palliative Care Team, made it possible to develop over 6 months a training program, an information procedure and several original documents. RESULTS: A total of 34 one-hour training courses for all professionals were organized. A procedure for making information available, including the right to draft ADs, has been implemented. This procedure is personalized, gradual and multi-professional. When a patient wishes to write his AD, he is accompanied by a dedicated team and benefits from a specific form, which enlighten values and preferences before addressing the desired level of therapeutic commitment. Communication elements were diffused, and a specific training on "anticipated discussions" was created. A dedicated space in the computerized chart makes it possible to locate the existence of ADs and to display them instantaneously. DISCUSSION - CONCLUSION: Based on the observation of the obstacles to the use of ADs, the strategy we implemented aims to provide information that is both efficient and ethically respectful for both patients and caregivers. ADs are only one element facilitating autonomy and anticipation, and must be associated with a shared continuous definition of the project and of the goals of care.

Attitudes of nursing students towards the legalization of euthanasia, end-of-life planning and the spiritual dimension: A quantitative study.

BACKGROUND: The Law on Euthanasia was approved in Spain and implemented in the health system. Nursing students must position themselves with respect to euthanasia in their work in the near future. OBJECTIVES: To know the attitudes of nursing students towards the legalization of euthanasia, its relationship with end-of-life planning, and the spiritual dimension. DESIGN: A cross-sectional descriptive quantitative study. SETTINGS AND PARTICIPANTS: Study carried out with students of the Nursing Degree at the Universities of Huelva and Almería in Spain from April to July 2021. METHODS: Attitudes towards the final phase of life, Anxiety towards death, and Attitudes towards Euthanasia questionnaires were administered. Descriptive, inferential and logistic regression statistics were calculated to determine the relationship between attitudes towards euthanasia and sociodemographic variables, end-of-life planning, and the spiritual dimension. RESULTS: 285 Nursing students with an average age of 23.58 years (SD = 8.19) participated. The scores on the attitude towards euthanasia were higher than the mean. While 70.5 % of the students were aware about advanced planning, only 2.5 % of them had made advanced plans. In religious practice and the spiritual dimension, the average score was high as they considered these elements to be of great support at the end of life. In terms of anxiety about death, the average score was significantly higher in women. Age, spiritual accompaniment and help, and the frequency with which spiritual beliefs are practiced are predictive factors for the attitude towards euthanasia. CONCLUSIONS: Students have a positive vision of euthanasia while admitting anxiety about death. They emphasize advance planning and greater religious practice as supports for euthanasia. The need for curricular training related to moral deliberation and values that support euthanasia is clear.

Impact of a multifaceted strategy in end-of-life care in a tertiary hospital: A quasi-experimental study.

OBJECTIVE: To evaluate the impact of a multifaceted strategy for quality end-of-life care in a tertiary public hospital in Brazil. METHODOLOGY: The study design was quasi-experimental. The multifaceted strategy was applied between January and June 2017, and involved training the healthcare team in end-of-life discussions, the creation and documentation of advance directives, and consultation with the team specialized in palliative care. The periods analyzed were the pre-test period (Time 1, July 2015 to June 2016) and the post-test period (Time 2, July 2017 to June 2018). RESULTS: Time 1 involved 302 deaths, with an average hospital stay of 21 days; Time 2 involved 410 deaths, with an average hospital stay of 16 days. Patients were prescribed morphine (44.04% vs. 36.3% [p = 0.367]), methadone (9.60% vs. 4.39% [p = 0.247]), midazolam (43.05% vs. 47.80% [p = 0.73]), blood transfusions (31.13% vs. 24.63% [p = 0.828]), enteral feeding (56.62% vs. 38.54% [p = 0.59]) and antibiotic therapy (50.73% vs. 50.73% [p = 0.435]). CONCLUSION: This study found no changes in the end-of-life care quality indicators after the strategy was implemented. Multimodal educational strategies that develop communication skills in palliative care may enhance the quality of end-of-life care.

Testamento vital sob a ótica de enfermeiros que assistem pacientes em situação de terminalidade / Living will from the perspective of nurses caring for terminally ill patients / El testamento vital en la perspectiva de los enfermeros que atienden a pacientes terminales

Objetivos: conhecer a representação do Testamento Vital para os enfermeiros que atuam na assistência à pacientes em situação de terminalidade. Métodos:estudo de abordagem qualitativa, realizado em hospital público universitário de alta complexidade localizado na cidade de São Paulo, São Paulo, Brasil, com 15 enfermeiros que atuam na assistência à pacientes terminais, por meio de entrevista norteada pela questão "Fale a respeito do Testamento Vital". A análise dos dados foi desenvolvida pelo Discurso do Sujeito Coletivo. Resultados: identificou-se três categorias que compõem o Discurso do Sujeito Coletivo dos enfermeiros em relação ao testamento vital: "o enfermeiro frente às diretivas antecipadas de vontade"; "o enfermeiro frente à família do paciente em terminalidade" e "o enfermeiro frente ao médico do paciente em terminalidade". Conclusão: o testamento vital representa, na perspectiva dos enfermeiros, a autonomia e o direito do paciente pelas decisões nas situações de terminalidade que devem ser compartilhadas com seus familiares e profissionais de saúde.

Objectives: to know the representation of the living will for nurses working in the care of terminally ill patients. Methods: a qualitative study conducted in a high complexity public university hospital located in the city of São Paulo, São Paulo, Brazil. An interview guided by the question "Talk about the living will" was performed with 15 nurses working in the care of terminally ill patients. Data analysis was performed using the Discourse of the Collective Subject. Results: three categories that make up nurses' Collective Subject Discourse in relation to living wills were identified: "the nurse before advance directives"; "the nurse before the terminally ill patient's family" and "the nurse before the terminally ill patient's physician". Conclusion: from the perspective of nurses, the living will represent the patient's autonomy and right to make decisions in terminally ill situations that must be shared with their family members and health professionals

Objetivos: conocer la representación del Testamento Vital para enfermeros que actúan en el cuidado de enfermos terminales. Métodos: estudio cualitativo realizado en un hospital universitario público de alta complejidad ubicado en la ciudad de São Paulo, São Paulo, Brasil. Se realizó una entrevista guiada por la pregunta "Hablemos del Testamento Vital" con 15 enfermeros que actúan en el cuidado de pacientes terminales. El análisis de los datos se realizó utilizando el Discurso del Sujeto Colectivo. Resultados: se identificaron tres categorías que componen el Discurso del Sujeto Colectivo de los enfermeros en relación a los testamentos vitales: "el enfermero frente a las directivas anticipadas"; "la enfermera frente a la familia del enfermo terminal" y "la enfermera frente al médico del enfermo terminal". Conclusión: en la perspectiva de los enfermeros, el testamento vital representa la autonomía y el derecho del paciente a tomar decisiones en situaciones terminales que deben ser compartidas con sus familiares y profesionales de la salud.

As experiências dos profissionais de saúde no cumprimento da Diretiva Antecipada de Vontade na prática clínica / Health professionals' experiences in complying with the Advance Directive of Will in clinical practice / Las experiencias de los profesionales sanitarios en el cumplimiento de la Directiva Anticipada de Voluntades en la práctica clínica

Resumo Enquadramento: A Diretiva Antecipada de Vontade, permite à pessoa manifestar o seu desejo relativo à sua vivencia no final da vida. Cumprir esta diretiva exige aos profissionais de saúde competências na medida em que envolve vivências de grande complexidade. Objetivo: Identificar as experiências dos profissionais de saúde no cumprimento da Diretiva Antecipada de Vontade, na prática clínica. Metodologia: Estudo qualitativo, exploratório descritivo com recurso a entrevista semiestruturada. Foram incluídos como participantes os profissionais de saúde de um hospital do norte de Portugal. Efetuada análise de conteúdo segundo o referencial de Bardin. Foram respeitados todos os princípios éticos e legais. Resultados: Os participantes do estudo consideram a diretiva antecipada de vontade como um instrumento que especifica os desejos do doente quanto aos cuidados a receber em fim de vida. Enfatizam que no seu cumprimento experienciam uma variabilidade de emoções e sentimentos, medo, impotência, respeito. Conclusão: Para cumprir a diretiva antecipada de vontade é urgente construir critérios para a tomada de decisão perfilhada e partilhada. Para isto, é necessário uma maior aposta na formação.

Abstract Background: The Advance Directive of Will allows the person to express their desire regarding their end-of-life experience. Complying with this directive requires health professionals to have the skills to deal with the complexity of these experiences. Objective: To identify the health professionals' experiences in complying with the Advance Directive of Will in clinical practice. Methodology: A qualitative, exploratory, and descriptive study was conducted using semi-structured interviews. Participants included health professionals from a hospital in northern Portugal. Content analysis was performed according to Bardin's framework. All ethical and legal principles were respected. Results: Study participants consider the advance directive of will as an instrument that specifies the patient's wishes regarding end-of-life care. They emphasize that, when fulfilling these directives, they experience various emotions and feelings, like fear, impotence, and respect. Conclusion: Complying with the advance directive of will demands the definition of criteria for supported and shared decision-making. Thus, a greater commitment to training is necessary.

Resumen Marco contextual: La Directiva Anticipada de Voluntades permite a la persona expresar sus deseos en relación con su experiencia al final de la vida. Cumplir esta directiva exige competencias a los profesionales sanitarios, ya que implica experiencias de gran complejidad. Objetivo: Identificar las experiencias de los profesionales sanitarios en el cumplimiento de la Directiva Anticipada de Voluntades en la práctica clínica. Metodología: Estudio cualitativo, exploratorio y descriptivo mediante entrevistas semiestructuradas. Los participantes fueron profesionales sanitarios de un hospital del norte de Portugal. El análisis de contenido se realizó según el marco de Bardin. Se respetaron todos los principios éticos y legales. Resultados: Los participantes en el estudio consideraron la directiva anticipada de voluntades como un instrumento que especifica los deseos del paciente respecto a los cuidados que debe recibir al final de la vida. Destacaron que, al cumplirla, experimentaron una serie de emociones y sentimientos, como miedo, impotencia, respeto. Conclusión: Para cumplir la directiva anticipada de voluntades, urge construir criterios para una toma de decisiones perfeccionada y compartida. Para ello, es necesario invertir más en formación.

Palliative Care in Colombia: home care services, access barriers, and progress in the implementation of these programs during the COVID-19 pandemic

Palliative care aims to comprehensively alleviate the suffering of patients with chronic, degenerative and terminal diseases, and thus improve their quality of life by including physical, psychosocial, and spiritual aspects in the care process. In Colombia, the provision of palliative care services is regulated by Law 1733 of 2014, but access to them is limited since the health care centers where these services are provided are concentrated in the large capitals of the country. Furthermore, the general population is unaware of the existence of this type of care. The fear of contagion during the COVID-19 pandemic created additional barriers, hindering even more the access to palliative care. For example, the access of health personnel in charge of these services to patients' homes was restricted and it was observed that people avoided attending their appointments at health centers. Similarly, isolation and social distancing measures further worsened the psychosocial suffering of both inpatients and their families, as the support and presence of their loved ones was extremely limited during the end-of-life period, making, in turn, the grieving process more difficult when these patients passed away. Bearing this in mind, the objectives of this reflection were to explore the current situation of palliative care services in Colombia and analyze the impact that the COVID-19 pandemic has had on their provision at home.

Los cuidados paliativos buscan aliviar de manera integral el sufrimiento de los pacientes con enfermedades crónicas, degenerativas y terminales, y, de esta forma, mejorar su calidad de vida al incluir aspectos físicos, psicosociales y espirituales en la atención. En Colombia, la prestación de los servicios de cuidados paliativos está regulada por la Ley 1733 de 2014; sin embargo, el acceso a los mismos es limitado, ya que los centros de atención donde se prestan estos servicios se concentran en las capitales departamentales; además, la población general desconoce la existencia de este tipo de atención. El temor al contagio durante la pandemia por COVID-19 ha creado barreras adicionales que dificultan aún más el acceso a los cuidados paliativos; por ejemplo, se ha restringido el acceso del personal de salud encargado de estos servicios a los domicilios de los pacientes y se ha evidenciado que las personas evitan asistir a sus consultas a los centros de salud. De igual forma, las medidas de aislamiento y distanciamiento social han empeorado aún más el sufrimiento psicosocial de los pacientes hospitalizados, así como el de sus familias, ya que el apoyo y la presencia de los seres queridos se han limitado seriamente durante el periodo de fin de la vida, lo que a su vez ha hecho más difícil el proceso de duelo cuando estos pacientes fallecen. Con esto en mente, los objetivos de la presente reflexión fueron explorar la situación actual de los servicios de cuidados paliativos en Colombia y analizar el impacto que ha tenido la pandemia por COVID-19 en la prestación domiciliaria de este tipo de cuidados.

Diretivas antecipadas da vontade: autonomia do paciente e segurança profissional / Advance directives: patient autonomy and professional safety / Directivas anticipadas de voluntad: autonomía del paciente y seguridad profesional

Resumo Este estudo teórico discorre sobre a bioética no sentido de promover e assegurar a dignidade do paciente de uma forma segura, que obedeça a sua tomada de decisão, seguindo normativas e protocolos que garantam o cumprimento dessa vontade, e trazendo também segurança para equipe assistencial. A ausência de consenso no meio jurídico, por falta de regulamentações que explicitem as regras para a elaboração de um modelo de diretivas de vontade, gera insegurança nos profissionais de saúde envolvidos, familiares e paciente. Para garantir esse direito, além da normatização jurídica, é necessário que os profissionais tenham pleno conhecimento do assunto, a fim de orientar e informar corretamente seus pacientes. Não basta assegurar ao indivíduo o direito de manifestar sua vontade, é preciso ainda a certeza de que esta será cumprida. Há a necessidade de ampliar discussões acerca da temática, com ênfase na realidade brasileira.

Abstract This theoretical study discusses bioethics in the sense of safely promoting and ensuring the patients' dignity, respectful of their decision making, following regulations and protocols that help fulfill this will and bring safety to the care team. The lack of clear and consensual legal regulations on how to elaborate an advance directive generates uncertainty among healthcare providers, patients and their families. Beyond legal standardization, professionals must also have full knowledge on the topic to correctly guide and inform their patients, thus guaranteeing this right. But ensuring the right to express one's will is not enough—one must be assured that such whishes will be fulfilled. Further and broader discussions on this topic anchored on the Brazilian reality are needed.

Resumen Este estudio teórico trata la bioética en el sentido de promover y garantizar la dignidad del paciente de forma segura, que acepte su toma de decisiones, siguiendo normas y protocolos que garanticen el cumplimiento de esa voluntad, además de brindar seguridad al equipo de atención. La falta de consenso en el ámbito legal respecto a normativa para la elaboración de un modelo de directivas de voluntad produce inseguridad en los profesionales de la salud involucrados, familiares y pacientes. La garantía de este derecho, además de la regulación legal, requiere que los profesionales conozcan el tema para orientar e informar correctamente a sus pacientes. No basta con garantizar al individuo el derecho a expresar su voluntad, sino que también es necesario la certeza de que esta se cumplirá. Son necesarios más estudios para ampliar las discusiones sobre el tema, con énfasis en el contexto brasileño.

[Palliative care guidelines in uro-oncology]. / Leitliniengerechte palliativmedizinische Therapie in der Uroonkologie.

Palliative care is an integral part in the treatment of patients in uro-oncology. The German S3 guideline palliative care for patients with incurable cancer is an essential working basis for physicians and healthcare workers. In addition to basic recommendations in palliative care, the guideline provides evidence-based advice in a symptom-oriented approach. Basic knowledge in palliative care is recommended for every urologist who is treating uro-oncologic patients.

Conhecimento sobre diretivas antecipadas de vontade em hospital-escola / Knowledge regarding advance directives in a teaching hospital / Conocimientos sobre directivas anticipadas de voluntad en un hospital docente

Resumo O objetivo deste estudo foi avaliar o conhecimento de profissionais de saúde e usuários sobre diretivas antecipadas de vontade em hospital-escola brasileiro. Aceitaram participar 145 pessoas, sendo 66,9% delas profissionais de saúde e 33,1%, usuários. A maioria dos participantes não conhecia diretivas antecipadas de vontade, com maior incidência entre usuários (61,9% dos profissionais, 91,7% dos usuários; p <0,001). Após serem instruídos acerca das diretivas antecipadas, 97,9% dos profissionais e 95,8% dos usuários ( p =0,60) afirmaram que pessoas deveriam elaborar diretivas e que a responsabilidade de iniciar a conversa era do médico (56,7%, 58,3%, respectivamente, p =0,71). Após a pesquisa, 73,2% dos profissionais e 58,3% dos usuários ( p =0,19) pensava em elaborar diretivas. Conclui-se que o conhecimento sobre o tema ainda está aquém do ideal no campo assistencial no hospital-escola avaliado, sendo menor entre usuários.

Abstract This study evaluated the knowledge of health professionals and users regarding advance directives in a Brazilian teaching hospital. The study sample comprises 145 participants - 66.9% of them health professionals and 33.1% users. Most participants had no knowledge about advance directives, with a higher incidence among users (61.9% of professionals, 91.7% of users; p <0.001). After learning about advance directives, 97.9% of professionals and 95.8% of users ( p =0.60) stated that individuals should draft directives and that physicians were responsible for initiating the conversation (56.7% and 58.3%, respectively, p =0.71). After the research, 73.2% of professionals and 58.3% of users ( p =0.19) thought about drafting directives. In conclusion, knowledge on the subject is still less than ideal in health care in the teaching hospital evaluated, especially among users.

Resumen El objetivo de este estudio fue evaluar el conocimiento de profesionales de salud y usuarios sobre directivas anticipadas de voluntad en un hospital docente brasileño. Un total de 145 personas aceptaron participar, el 66,9% de ellos profesionales de la salud y el 33,1% usuarios. La mayoría de los participantes no conocían directivas anticipadas de voluntad, con mayor incidencia entre usuarios (61,9% de los profesionales, 91,7% de los usuarios; p <0,001). Después de ser instruidos acerca de las directivas anticipadas, el 97,9% de los profesionales y el 95,8% de los usuarios ( p =0,60) afirmaron que las personas deberían elaborar directivas y que la responsabilidad de iniciar la conversación era del médico (56,7%, 58,3%, respectivamente, p =0,71). Después de la encuesta, el 73,2% de los profesionales y el 58,3% de los usuarios ( p =0,19) pensaba en elaborar directivas. Se concluye que el conocimiento sobre el tema aún está lejos del ideal en el campo de la atención en el hospital docente evaluado, siendo menor entre los usuarios.

Age-not sex or gender-makes the case of Ellie Anderson Complex.

In 'The Complex Case of Ellie Anderson', Joona Rasanen and Anna Smajdor raise several ethical questions about the case. One question asks, but does not answer, whether Ellie faced discrimination for being transgender when her mother was not allowed access to Ellie's sperm following her death. In raising the question, the authors imply anti-trans bias may have influenced this determination. However, this inference is not supported by current ethical and legal guidance for posthumous use of gametes, with which Ellie's case is consistent. We consider the authors' responses to their other ethical queries, and how their suggestions for what options might have been available to Ellie and her family are instructive for addressing attempts in the USA and UK to restrict minors' access to gender-affirming medical treatment, including puberty-blocking therapy.

Euthanasia in persons with advanced dementia: a dignity-enhancing care approach.

In current Western societies, increasing numbers of people express their desire to choose when to die. Allowing people to choose the moment of their death is an ethical issue that should be embedded in sound clinical and legal frameworks. In the case of persons with dementia, it raises further ethical questions such as: Does the person have the capacity to make the choice? Is the person being coerced? Who should be involved in the decision? Is the person's suffering untreatable? The use of Advance Euthanasia Directives (AED) is suggested as a way to deal with end-of-life wishes of persons with dementia. However, in the Netherlands-the only country in which this practice is legal-the experiences of patients, doctors, and relatives have been far from satisfactory.Our paper analyses this complex ethical challenge from a Dignity-Enhancing Care approach, starting from the Dutch experiences with AED as a case. We first consider the lived experiences of the different stakeholders, seeking out a dialogical-interpretative understanding of care. We aim to promote human dignity as a normative standard for end-of-life care practices. Three concrete proposals are then presented in which this approach can be operationalised in order to deal respectfully with the end-of-life choices of persons with dementia.

Nurse roles in the advance directive system in Korea.

BACKGROUND: In 2016, the Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care was implemented in Korea, providing a broad framework for end-of-life decision-making for the first time and making advance directives legally recognized documents. This Act can correct long-standing under-recognition of patients as valid decision makers for their own treatment choices. However, limited recognition of patient self-determination, rigid legal forms for documenting patient wishes, and the roles of family under the Act may pose challenges both to patients and nurses. AIM: This paper critiques whether this newly introduced system of advance directives can truly guarantee protection of the patient's interests and respect for patient autonomy in real life​, and discusses ethical and legal issues regarding the Act. SOURCE OF EVIDENCE: We reviewed the current system of advance directives by raising three questions: (1) Do advance directives reflect a competent person's voluntary and informed choice?, (2) Are advance directives applicable in diverse clinical situations?, and (3) Does the Korean advance directive system ensure that such directives are honored in reality? CONCLUSION: Although the Act is an important first step in respecting patient autonomy in end-of-life decision-making, it remains inadequate as it fails to provide thorough guidance in terms of the quality of writing process, applicability, and the guaranteed effects of advance directives. IMPLICATIONS FOR NURSING AND HEALTH POLICY: As nurses are best situated for addressing these limitations due to their roles and competencies in clinical practice, expanding the roles of nurses in every stage of advance directive practice could help achieve the original purpose of advance directives. This calls for a policy that promotes an expanded role of nurses to improve the quality of advance directive practice.

Trial by Triad: substituted judgment, mental illness and the right to die.

Substituted judgment has increasingly become the accepted standard for rendering decisions for incapacitated adults in the USA. A broad exception exists with regard to patients with diminished capacity secondary to depressive disorders, as such patients' previous wishes are generally not honoured when seeking to turn down life-preserving care or pursue aid-in-dying. The result is that physicians often force involuntary treatment on patients with poor medical prognoses and/or low quality of life (PMP/LQL) as a result of their depressive symptoms when similarly situated incapacitated patients without such depressive symptoms would have their previous wishes honoured via substituted judgment. This commentary argues for reconsidering this approach and for using a substituted judgment standard for a subset of EMP/LQL patients seeking death.

Withholding or withdrawing life support in long-term neurointensive care patients: a single-centre, prospective, observational pilot study.

PURPOSE: Scarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting. MATERIALS AND METHODS: A prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire. RESULTS: 8 (25%) physicians and 24 (75%) nurses participated in the study by providing their 'treatment decisions' for 14 patients at several time points. EOLD was 'made' 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment. CONCLUSIONS: Our findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals.