Cuestiones bioéticas involucradas en los Cuidados Paliativos: desde la perspectiva de los profesionales de la salud / Bioethical issues involved in Palliative Care: from the perspective of health professionals

Las cuestiones inherentes al final de la vida constituyen un inmenso desafío para los médicos, debido a la falta de educación formal en lo inherente a cuidados paliativos, y a que se entrelazan conceptos médicos, religiosos, legales y bioéticos en su abordaje. El objetivo de este estudio es identificar, desde la perspectiva de los profesionales de la salud, las cuestiones éticas involucradas en el proceso de atención de pacientes incluidos en cuidados paliativos. Para ello se llevó a cabo de una revisión de 10 artículos, en los cuales se observa la carencia de formación bioética y la aplicación inadecuada (o falta) en lo inherente a manejo adecuado de la información y la dificultad en su comunicación, toma de decisiones compartidas, respeto de la autonomía del paciente, verdad médica, limitación de esfuerzos terapéuticos (AU)

End-of-life issues constitute an immense challenge for physicians, due to the lack of formal education regarding palliative care, and the intertwining of medical, religious, legal, and bioethical concepts in their approach. The objective of this study is to identify, from the perspective of health professionals, the ethical issues involved in the care process for patients included in palliative care. For this, a review of 10 articles was carried out, in which the lack of bioethical training and the inadequate application (or lack) is observed in terms of the proper management of information and the difficulty in its communication, decision making shared, respect for patient autonomy, medical truth, limitation of therapeutic efforts (AU)

Ethical considerations in elderly patients with acute coronary syndrome.

Acute coronary syndrome (ACS) is one of the main causes of mortality and morbidity in the elderly. The prevalence of ACS increases with age and patients with advanced age have some co-morbidities that require an individualized approach, which includes a comprehensive geriatric assessment. Ageism is a matter of great concern. In this scenario, some ethical conflicts may arise which should be anticipated, considered, and solved. Clinicians will need to prioritize and allocate resources, to avoid futility/proportionality, which is not always easy to assess in these patients. This review aims to summarize the evidence regarding ethical conflicts that may arise in the management of patients with ACS and advanced age. We will discuss how to choose the best option (which frequently is not the only one) with the lowest risk for harm, considering and respecting the patients' decision. The four basic principles of bioethics (beneficence, non-maleficence, autonomy, and justice) are thoroughly reviewed, and discussed, regarding their role in the decision making process.

Cuidados terminais: reflexão filosófica sob a ótica da ética e da moral / Cuidados terminales: reflexión filosófica desde la perspectiva de la ética y la moral / Terminal care: philosophical reflection from ethical and moral perspectives

RESUMO Objetivo Objetivou-se refletir sobre a prática assistencial do cuidado ao paciente com doença terminal sob a ótica da ética e da moral. Método Trata-se de estudo teórico-reflexivo realizado a partir da análise crítica de textos filosóficos sobre ética e moral no contexto do desenvolvimento moral humano e das práticas de saúde. Resultados Na época dos filósofos gregos, a ética se baseava na busca pela felicidade; contudo, com o advento do cristianismo, ela passou a ser vista como um dever. Pela ótica de Kant, a ética e a moral são também um dever, um imperativo categórico, e a questão da manutenção da vida deve ser perseguida, abrindo espaço para a ocorrência de práticas de distanásia. Já para Hans Jonas, o dever dos profissionais de saúde é considerar a qualidade de vida dos pacientes mais do que da quantidade de vida, introduzindo conceitos dos cuidados paliativos. Conclusão e implicações para a prática Tais conceitos se modificaram ao longo da história, sendo necessário conhecê-los, fazer uma reflexão crítica sobre a finitude humana e repensar as condutas nesse processo.

RESUMEN Objetivo El objetivo fue reflexionar sobre la práctica del cuidado al paciente con enfermedad terminal desde una perspectiva de la ética y la moral. Método Se trata de un estudio teórico-reflexivo, basado en el análisis crítico de textos filosóficos sobre ética y moral en el contexto del desarrollo moral humano y las prácticas de salud. Resultados La ética, en la época de los filósofos griegos, se basaba en la búsqueda de la felicidad, sin embargo, con el advenimiento del cristianismo, ésta pasó a ser vista como un deber. Desde el punto de vista de Kant, la ética y la moral también son un deber, un imperativo categórico y la cuestión del mantenimiento de la vida debe ser perseguida, abriendo espacio para la ocurrencia de prácticas distanásicas. Para Hans Jonas, el deber de los profesionales de la salud es considerar la calidad de vida de los pacientes por encima de la cantidad de vida, introduciendo conceptos de cuidados paliativos. Conclusión e implicaciones para la práctica Tales conceptos han cambiado con la historia, requiriendo conocimiento y reflexión crítica sobre la finitud humana y repensar el comportamiento en este proceso.

ABSTRACT Objective To reflect on the care practice for patients with a terminal illness from ethical and moral perspectives. Method This is a theoretical-reflective study carried out from the critical analysis of philosophical texts on ethics and morals in the context of human moral development and health practices. Results At the time of Greek philosophers, ethics was based on the search for happiness. However, with the advent of Christianity, this came to be seen as a duty. According to Kant, ethics and morals are duties as well — a categorical imperative — and the life maintenance issue must be pursued, opening space for the occurrence of dysthanasia practices. From Hans Jonas' point of view, otherwise, health professionals must consider the quality of life of the patient over their life span, introducing concepts of palliative care. Conclusion and implications for the practice The above-mentioned concepts changed over time, and knowing them is necessary for critically reflecting on human finitude and rethinking practices that revolve around this process.

Uninformed consent: Who knows what Ivan Ilyich would have thought?

ABSTRACT: In the modern era, when prolonging life is not an option, the end-of-life discussions are unavoidably influenced by Neuroethics. Despite this, it is interestingly evident how the sentiments of a terminal patient of 1885 and a physician of 2020, are still comparable. This paper pre-sents the arguments behind the so-called "Therapeutic Misconception" and the aim of palliative care to provide dying patients support. It is essential to address priorities of informed consent, signed before any remedy is provided. A key component of the newest Neuroscience research is the analysis of motivation and free will. So, it is necessary to comprehend if the patient struggles to feel at peace with these aspects of his "right to die": Is he free to choose or is he influenced by the doctors? Is this confusion an example of "Therapeutic Misconception"? Is his Informed Consent totally "Informed"? In order to broaden our understanding, we account for many critical situations, such as the mentally impaired Psychiatric patients or the famous Italian case of Eluana Englaro. In addition, we suggested some current approaches such as Artificial Intelligence, useful in preserving some cognitive functions the patient may have lost. Furthermore, research in this field is very critical and in some Catholic countries like Italy, people faced difficulties accepting the idea of the "Anticipated directives". In general, whatever the mental status and whatever the terminal state, the patients seem still far from handling their own auto-determination and their Consent, even if the ultimate goal is to die with dignity.

Placebo in new Covid-19 vaccine trials: data quality prioritised over participants' rights.

The WHO Ad Hoc Expert Group on the Next Steps for Covid-19 Vaccine Evaluation makes recommendations on the use of placebo controlled trials in ongoing and future Covid-19 vaccine research. These recommendations unequivocally prioritise data quality over participants' rights and safety. Participants in trials of vaccines which have received emergency use listing or authorisation would be refused available vaccines. Placebo-controlled trials that would be impossible to conduct in rich countries would be permitted in poor countries. If these suggestions are implemented, the major beneficiary will be the vaccine industry.

A qualitative study of clinicians' perspectives on independent rights advice for involuntary psychiatric patients in British Columbia, Canada.

BACKGROUND: In British Columbia (BC), Canada, clinicians are responsible for giving involuntary psychiatric patients rights information upon admission. Yet an investigation by the BC Office of the Ombudsperson found that clinicians are not always fulfilling this responsibility. The Ombudsperson recommended that the provincial government fund an independent body to give rights advice to patients. METHODS: To understand how clinicians feel about this recommendation, focus groups of clinicians who may give psychiatric patients rights information (n = 81) were conducted in Vancouver, BC, to probe their attitudes toward independent rights advisors. The focus group transcripts were thematically analyzed. RESULTS: Most clinicians believe that giving rights information is within their scope of practice, although some acknowledge that it poses a conflict of interest when the patient wishes to challenge the treatment team's decisions. Participants' chief concerns about an independent rights-advice service were that (a) patients may experience a delay in receiving their rights information, (b) integrating rights advisors into the workflow would complicate an already chaotic admission process, and (c) more patients would be counselled to challenge their hospitalization, leading to an increased administrative workload for clinical staff. However, many participants believed that independent rights advisors would be a positive addition to the admission process, both allowing clinicians to focus on treatment and serving as a source of rights-related information. CONCLUSIONS: Participants were generally amenable to an independent rights-advice service, suggesting that the introduction of rights advisors need not result in an adversarial relationship between treatment team and patient, as opponents of the proposal fear. Clearly distinguishing between basic rights information and in-depth rights advice could address several of the clinicians' concerns about the role that independent rights advisors would play in the involuntary admission process. Clinicians' and other stakeholders' concerns should be considered as the province develops its rights-advice service.

Breaking bad news: tackling cultural dilemmas.

Requesting that serious diagnoses be concealed from patients, a widespread phenomenon in many cultures, presents a professional dilemma. Practical and sensitive communication strategies are needed. METHODOLOGY: In this paper, we use analysis of the existing literature to develop a communication tool for practitioners facing requests for diagnostic non-disclosure. Our approach builds on existing strategies, in providing a mnemonic communication tool, permitting more than one outcome, and focusing on the need for mutual understanding and cooperation. RESULTS: Existing work on this dilemma highlights the need to appreciate the family's standpoint, affirm their benevolent intentions and correct misperceptions. To this end, we have developed a mnemonic tool, 'ARCHES', to be used in situations where the family has requested diagnostic non-disclosure. The model has six stages: acknowledge the request for non-disclosure, build the relationship, find common ground, honour the patient's preferences and outline the harm of non-disclosure, provide emotional support and devise a supportive solution. CONCLUSION: Facing requests for diagnostic non-disclosure is a challenge of communication. The dilemma is particularly marked when practising across cultures. Our model gives a structure for building rapport with the family and realigning their misperceptions while upholding the patient's right to knowledge.

Emergency contraception: unresolved clinical, ethical and legal quandaries still linger.

Emergency contraception (EC) has been prescribed for decades, in order to lessen the risk of unplanned and unwanted pregnancy following unprotected intercourse, ordinary contraceptive failure, or rape. EC and the linked aspect of unintended pregnancy undoubtedly constitute highly relevant public health issues, in that they involve women's self-determination, reproductive freedom and family planning. Most European countries regulate EC access quite effectively, with solid information campaigns and supply mechanisms, based on various recommendations from international institutions herein examined. However, there is still disagreement on whether EC drugs should be available without a physician's prescription and on the reimbursement policies that should be implemented. In addition, the rights of health care professionals who object to EC on conscience grounds have been subject to considerable legal and ethical scrutiny, in light of their potential to damage patients who need EC drugs in a timely fashion. Ultimately, reproductive health, freedom and conscience-based refusal on the part of operators are elements that have proven extremely hard to reconcile; hence, it is essential to strike a reasonable balance for the sake of everyone's rights and well-being.

Disagreement About Surgical Intervention in Trisomy 18.

In this case, we explore physician conflict with performing surgery (tracheostomy) for long-term ventilation in a term infant with trisomy 18 and respiratory failure. Experts in neonatal-perinatal medicine, pediatric bioethics, and pediatric palliative care have provided comments on this case. An additional commentary was written by the parent of another infant with trisomy 18, who is also a medical provider (physical therapist).

Actuación ante los dilemas éticos en la consulta tras divorcio. Papel del menor según edad y nivel de madurez / Action before ethical dilemmas in the consultation after divorce. Role of the minor according to age and level of maturity

En los últimos años el número de divorcios ha ido aumentando, siendo en ocasiones, para el paciente pediátrico, el divorcio de sus padres un elemento traumático. Nuestro objetivo fue analizar los conflictos éticos que se producen en la relación sanitaria médico-padres-hijo y de forma más específica en niños procedentes de separación/divorcio. Se realizó un estudio descriptivo mediante una encuesta compuesta de 39 items. Previamente se realizó un análisis bibliográfico exhaustivo de artículos relacionados. Nuestros resultados muestran que solo el 35% de los pediatras ha recibido formación en bioética pese a su importancia en la práctica diaria. Sobre otras cuestiones, la mayoría (57,5%) no retiraría el tratamiento de un paciente enfermo pese a que aumentara su calidad de vida, y actuaría ante una decisión equivocada de los padres (82,5%). Dan poco valor a las decisiones del menor (6,05%), raramente informados exclusivamente (5%). En cambio, se les informa primero en un 20% de los casos y en el 90% se les implica. Respecto a los progenitores, el 17,5% de las madres son informadas en exclusiva, nunca los padres. La ética tiene un valor intrínseco muy importante en las decisiones clínicas habituales, respetándose generalmente las normas y adaptándose a la situación particular de cada niño/a. En los casos en los que hay un conflicto importante, como divorcios, es importante conocer a quién se debe informar, y qué derecho tiene cada uno a decidir. Aún resulta difícil para algunos pediatras aplicar la ley 41/2002 de Autonomía del Paciente

Lately, number of divorces is increasing, nevertheless, a parents' divorce can become a traumatic problem for paediatric patients. Consequently, the aim of this study was to analyze the ethical conflicts that appear in the relationship between physician/parents/son/daughter, and more specifically those that a divorce generates. A descriptive study was developed through a survey composed by 39 items. Previously, an exhaustive bibliographic analysis was carried out. Our results show that only 35% of paediatricians interviewed have been educated in bioethics although this issue is important in daily practice. Other items show that 57,5% would not cancel a pharmacological treatment in order to improve quality of life. Also, they would react against a wrong parents' decision (82,5%). They give low value to the minor`s decision (6,05%), and rarely inform exclusively to adolescents (5%). In contrast, paediatricians sometimes ask to adolescents (20%) in first place and involved them to decide in 90% of cases. Besides, there are differences in the relation with fathers and mothers, 17,5% of mothers are informed exclusively, a fact that never hap-pens with fathers. Ethics has an intrinsic value very important in daily clinical decisions in order to respect the rules and to adapt them to the situation of every paediatric patient. When an important ethical conflict become, as a divorce is, it is essential to know who must be informed and the rights everyone has to make a decision. It is complicated to the paediatricians yet to develop 41/2002 law for Patient's autonomy

Aspectos éticos y legales ante la conspiración de silencio según los profesionales sanitarios / Ethical and legal aspects in the conspiracy of silence according to health professionals

OBJETIVOS: Conocer los discursos de los profesionales sanitarios sobre el marco normativo ético y legal en el contexto del pacto de silencio, como origen del fenómeno y sus consecuencias: participación en la toma de decisiones, obstinación terapéutica, limitación o adecuación del esfuerzo terapéutico y sedación paliativa. Estudio cualitativo descriptivo, enfoque fenomenológico. EMPLAZAMIENTO Y PARTICIPANTES: profesionales de enfermería y medicina de atención primaria, hospital y urgencias de Sevilla. MÉTODO: Entrevistas semiestructuradas. Áreas exploradas: comunicación inicial sobre diagnóstico, pronóstico y situación de últimos días, opinión sobre el pacto de silencio, consecuencias en el afrontamiento de la muerte y la participación en la toma de decisiones. Análisis de contenido interpretativo. RESULTADOS: Información a la familia de forma preferente, la mayoría desconocen los principios éticos al final de la vida, se confunde intimidad, autonomía y confidencialidad, si la conspiración de silencio está presente la mantienen. La autonomía está anulada, se aplica la beneficencia y la no maleficencia desde el punto de vista del profesional, se cita falta de justicia respecto a la comunicación e información según razones sociales. La participación del paciente en toma de decisiones imposible en este contexto; se sobreactúa para evitar la muerte cayendo en la obstinación terapéutica. No se suele practicar la adecuación del esfuerzo terapéutico y el rechazo del tratamiento es imposible. Aparece la eutanasia como categoría emergente, se confunde con la sedación paliativa. CONCLUSIONES: Desconocimiento del marco normativo ético y legal al final de la vida como causa del pacto de silencio, teniendo como consecuencias la falta de participación en la toma de decisiones, obstinación terapéutica y no aplicación de limitación del esfuerzo terapéutico

OBJETIVE: to collect the discourses of health professionals about the ethical and legal regulatory framework in the context of the pact of silence as origin of the phenomenon, and its consequences: participation in decision making, therapeutic obstinacy, limitation or adjustment of therapeutic efforts, and palliative sedation. A qualitative, descriptive study using a phenomenological approach. PLACE AND PARTICIPANTS: nurses and physicians in primary care, palliative care, hospital care, and emergency care in Seville. METHODS: Semi-structured interviews. Explored areas: breaking bad news regarding diagnosis, prognosis, and end of life; opinions about the conspiracy of silence, consequences for coping with death, and participation in decision making. Interpretive content analysis. RESULTS: Families are preferentially informed; most are unaware of ethical principles at the end of life; intimacy, autonomy, and confidentiality are mixed up terms; when present, the conspiracy of silence is maintained. Autonomy is overridden, beneficence and nonmaleficence are applied from the professional's perspective, lack of justice is mentioned regarding communication and information according to social reasons. Patient participation in decision making is impossible in this setting; overreacting occurs to avoid death, leading to therapeutic obstinacy. Therapeutic effort adjustment is not practiced and treatment refusal is impossible. Euthanasia appears as an emergent category, and is confused with palliative sedation. CONCLUSION: Ignorance of the ethical and legal regulatory framework for end-of-life care, as a cause of the pact of silence. Consequences include absence of patient participation in decision making, therapeutic obstinacy, and failure to implement therapeutic effort limitations

A Matter of Justice: "Fat" Is Not Necessarily a Bad Word.

This essay argues that the discrimination that fat patients face is an issue of health justice. Insofar as this is the case, bioethicists and health care providers should not only care about it but also work to dismantle the systematic, institutional, social, and individual factors that are contributing to it to ensure that fat patients receive high-quality health care, free of stigma and discrimination. The essay discusses a variety of ways in which fat patients are discriminated against and considers the false assumptions that fuel such discrimination. It concludes by considering the structural and social issues that contribute to fatness and pushes health care providers to abandon the assumption that being fat is an individual moral failing. Ultimately, the paper argues, "fat" is not necessarily a bad word, nor one that health care providers should avoid.

[Bioethics, Human Rights and COVID-19]. / Bioética, Derechos Humanos y COVID-19.

In this paper present, from a bioethical perspective, a reflection on how to reconcile efforts to combat the COVID-19 pandemic with the safeguard of human rights. To do this, I develop three points. First, the regulatory framework that justifies the restriction or suspension of rights in the face of serious threats to public health. Second, the declarations of the international bioethics committees on the way in which human rights should be protected during public health crisis. And third, a review of the main rights threatened both by the public health crisis and by the means adopted to combat it. Before going into each of these points, I offer a preliminary note to clarify certain legal concepts and underline the need to overcome disjunctive approaches in considering human rights.