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.

An end to coercion: rights and decision-making in mental health care.

The United Nations Convention on the Rights of Persons with Disabilities requires a paradigm shift from a medical model of disability to a social model that emphasizes overcoming the barriers to equality created by attitudes, laws, government policies and the social, economic and political environment. The approach adopted by the social model recognizes that people with psychosocial disabilities have the same right to take decisions and make choices as other people, particularly regarding treatment, and have the right to equal recognition before the law. Consequently, direct or supported decision-making should be the norm and there should be no substitute decision-making. Although recent mental health laws in some countries have attempted to realize a rights-based approach to decision-making by reducing coercion, implementing the Convention on the Rights of Persons with Disabilities can be challenging because it requires continuous refinement and the development of alternatives to coercion. This article reviews the impact historical trends and current mental health frameworks have had on the rights affected by the practice of involuntary treatment and describes some legal and organizational initiatives that have been undertaken to promote noncoercive services and supported decision-making. The evidence and examples presented could provide the foundation for developing a context-appropriate approach to implementing supported decision-making in mental health care.

La Convention des Nations Unies relative aux droits des personnes handicapées nécessite un changement radical pour passer d'un modèle médical du handicap à un modèle social mettant l'accent sur la levée des obstacles en matière d'égalité, créés par des attitudes, des lois, des politiques gouvernementales ainsi que l'environnement social, économique et politique. L'approche adoptée par le modèle social reconnaît que les personnes présentant un handicap mental ont le même droit de prendre des décisions et de faire des choix que les autres, notamment en matière de traitement, et ont droit à une reconnaissance égale devant la loi. Par conséquent, la prise de décision directe ou accompagnée doit être la norme et il ne doit exister aucune prise de décision substitutive. Bien que certains pays aient récemment cherché, à travers des lois sur la santé mentale, à instaurer une approche fondée sur les droits en matière de prise de décision en réduisant la coercition, la mise en œuvre de la Convention relative aux droits des personnes handicapées peut poser problème, car elle exige une amélioration continue et l'élaboration de solutions autres que la coercition. Cet article examine l'impact que les tendances historiques et les cadres actuels en matière de santé mentale ont eu sur les droits lésés par la pratique du traitement involontaire et décrit plusieurs initiatives législatives et organisationnelles qui ont été prises pour promouvoir les services non coercitifs et la prise de décision accompagnée. Les données et les exemples présentés peuvent servir de fondement à l'élaboration d'une approche adaptée au contexte pour mettre en place la prise de décision accompagnée en matière de soins de santé mentale.

La Convención de las Naciones Unidas sobre los Derechos de las Personas con Discapacidad requiere un cambio de paradigma, de un modelo médico de discapacidad a un modelo social que haga hincapié en la superación de las barreras a la igualdad creadas por las actitudes, las leyes, las políticas gubernamentales y el entorno social, económico y político. El enfoque adoptado por el modelo social reconoce que las personas con discapacidad psicosocial tienen el mismo derecho a tomar decisiones y a elegir como cualquier otra persona, especialmente en lo que se refiere al tratamiento, y tienen derecho a un reconocimiento igualitario ante la ley. Por lo tanto, la toma de decisiones directa o apoyada debería ser la norma y no debería haber un responsable sustituto de la toma de decisiones. Aunque las recientes leyes sobre salud mental de algunos países han tratado de aplicar un enfoque basado en los derechos para la adopción de decisiones mediante la reducción de la coerción, la implementación de la Convención sobre los Derechos de las Personas con Discapacidad puede ser un reto, ya que requiere un continuo perfeccionamiento y el desarrollo de alternativas a la coerción. Este artículo evalúa el impacto que las tendencias históricas y los marcos actuales de salud mental han tenido sobre los derechos afectados por la práctica del tratamiento involuntario y describe algunas iniciativas legales y organizativas que se han emprendido para promover servicios no coercitivos y apoyar la toma de decisiones. La evidencia y los ejemplos presentados podrían servir de base para desarrollar un enfoque apropiado al contexto para la implementación de la toma de decisiones apoyada en la atención de la salud mental.

[Clinical information, informed consent and medical deontology. A recent relationship]. / Información clínica, consentimiento informado y deontología médica. Una relación reciente.

In Spain, the right to clinical information and informed consent as a practical expression of the principle of autonomy, are legal conquests achieved in the late twentieth century. From the law they have been transferred to the codes of medical deontology. The aim of this work is to study the pace of this transfer. Historical review of the different codes of medical deontology in Spain since the Civil War, seeking the presence of these ideas in them. Until code of medical deontology of 1979, the idea of clinical information did not appear in the contemporary deontological norm, and the rules on consent did so in very restricted cases. As of that date, their appearance is progressive in the successive codes. Currently, both concepts are fully developed in Spanish deontological regulations. Medical Deontology has take on the ideas of patient information and informed consent. This has been a long process which have brought considerable changes the deontological orientations of the traditional form of doctor-patient relationship. In these aspects, medical deontology has drifted, from emphasizing the prudence of the doctor, to emphasize the duty to inform and give ample space to the patient's decisions, which he recognizes as an autonomous and reflective moral agent, capable of taking his own decisions about your health.

Medical Ethics in Radiography.

The medical field often requires radiologic technologists to make complex decisions that affect patients, employers, and colleagues. Technologists must consider practice standards when making choices, and also must act ethically to protect patients' safety and respect their autonomy. To make the most informed and ethical decisions, technologists should know the history of medical ethics, as well as be familiar with philosophical tools and ethical codes that can guide them in their daily practice.

Antoine-Marie Chambeyron (1797-1851): a forgotten disciple of Jean-Etienne Esquirol (1772-1840).

Antoine-Marie Chambeyron (1797-1851) was a disciple of Jean-Etienne Esquirol (1772-1840) that history forgot, undoubtedly because he made no original contribution to psychiatric nosography. In 1827, his interest in the medical-legal status of the insane led him to translate into French and annotate the first medical-legal psychiatric treatise ever published, which was the work of the German philosopher Johann Christoph Hoffbauer (1766-1827). His translation played a role in shaping the French Law of 1838, the first piece of modern legislation aimed at protecting the rights of mental patients and limiting the State's power to confine them arbitrarily. Chambeyron is among the least-cited contributors to the prestigious work of nineteenth-century French alienists.

A Modern History of 'Imperial Medicine' Surrounding Hansen's Disease: Strategies to Manage Public Opinion in Modern Japanese Media.

The purpose of this study is to understand the reality of imperial medicine by exploring the strategic attitude of the Japanese authority targeting the public who were not patients of Hansen's disease. For this purpose, this study examines the mass media data related to Hansen's disease published in Korea and Japan during the Japanese colonial rule. Research on Hansen's disease can be divided into medical, sociohistorical, social welfare, and human rights approach. There are medical studies and statistics on the dissemination of medical information about Hansen's disease and management measures, the history of the management of the disease, guarantee of the rights of the patients and the welfare environment, and studies on the autobiographical, literary writings and oral statements on the life and psychological conflicts of the patients. Among existing research, the topics of the study on Hansen's disease under the Japanese colonial rule include the history of the Sorokdo Island Sanatorium, investigation on the forced labor of the patients in the island, human rights violations against the patients, oral memoirs of the patients and doctors who practiced at that time. All of these studies are important achievements regarding the research on the patients. An important study of Hansen's disease in modern Japan is the work of Hujino Utaka, which introduces the isolation of and discrimination against the patients of Hansen's disease. Hujino Utaka's study examines the annihilation of people with infectious diseases in Japan and its colonies by the imperial government, which was the consequence of the imperial medical policies, and reports on the isolation of Hansen's disease patients during the war. Although these researches are important achievements in the study of Hansen's disease in modernity, their focus has mainly been on the history of isolation and exploitation in the Sorokdo Island Sanatorium and discrimination against the patients within the sanatorium, which was controlled by the director of the sanatorium. Consequently, the research tends to perceive the problem within the frame of antagonism between the agent of imperialism and the victims of exploitation by the hands of imperialism. Hence, it has limitations in that it has not fully addressed the problem of the people who were not Hansen's disease patients and as such, existed somewhere in between the two extremes in the process of administering medicine under the imperial rule. The purpose of this study is to identify the direction of imperial medicine in the history of Hansen's disease in Japan and to comprehend the characteristics of policy on Hansen's disease developed by Mitsuda Kensuke, who was behind the policy of imperial medicine, and examine the process of imperial medicine reaching out to the people (of Japan and its colonies). To achieve the goal, this study explores how the agent of imperial medicine gain the favor the public, who are not Hansen's disease patients, by means of the mass media. Specifically, this paper examines data in the Japanese language related to Korean patients of Hansen's disease including the mass media data on Hansen's disease in the source book titled The Collection of Data on Hansen's Disease in Joseon under the Colonial Rule(8 volumes) compiled by Takio Eiji, which has not been studied until now. It also reviews the cultural and popular magazines published in Japan and Joseon at that time.

[Salomon Neumann (1819-1908) and the Right to Health]. / Salomon Neumann (1819­1908) und das Recht auf Gesundheit.

The "Universal Declaration of Human Rights (UDHR)" of the United Nations (UN) of 1948 sets out a right to health as a common ideal and aspiration. In his writings on the reform of the Prussian Medical Charter "Public Health and property" 100 years before the UDHR was set out, the Jewish physician Salomon Neumann had defined health as a right for every citizen, a right that should to be protected by a public system of health care. His reasoning went beyond contemporaneous critical social discussion. Right of humans to health has been acknowledged nationally and internationally; in the Federal Republic of Germany, the question as to whether there is a basic right to health is still open.

[Free choice of doctor: patient's right or doctor's power?]. / Vrije artsenkeuze: recht of macht?

This article outlines the historical development of the principle of patients' free choice of doctor in the Netherlands. Far from being the result of debates on patients' rights, this principle was used instead as an instrument by the medical profession to gain a foothold in the power relations between doctors and sickness funds back in the early 20th-century. This development created a medical power bloc that lasted for most of that century and forced sickness funds and private insurers to start organizing in this fashion too. Therefore, when the new market ideology of introducing competition in health care was introduced in 1987, the fields of health provision and insurance were already defined by a high degree of cartelization. These relations lingered even after the introduction of regulated competition in 2006. Knowledge of this history therefore leads to a better understanding of current debates and problems in the organization of Dutch health care.

On TB Vaccines, Patients' Demands, and Modern Printed Media in Times of Biomedical Uncertainties: Buenos Aires, 1920-1950.

Reconstructing some of the experiences of people living with tuberculosis in Argentina in the first half of the twentieth century, as reflected not only in written and oral accounts but also in individual and collective actions, this article explores the ways in which patients came to grips with medical expertise in times of biomedical uncertainty. These negotiations, which inevitably included adaptations as well as confrontations, highlight a much less passive and submissive patient-physician relationship than is often assumed. Though patients were certainly subordinate to medical doctors' knowledge and practices, that subordination, far from absolute, was limited and often overthrown. The article focuses on patients' demands to gain access to a vaccine not approved by the medical establishment. By engaging with media organizations, the sick invoked their "right to health" in order to obtain access to experimental treatments when biomedicine was unable to deliver efficient therapies.

The Birth of a New Branch of Medicine: Psychiatry.

Psychiatric treatment prior to 1955 seemed to be at a standstill. All kinds of treatments, including surgical ones, were used ineffectively. Then suddenly, out of nowhere, a new treatment -chlorpromazine - created a worldwide revolution. Here is what we saw in Delaware. It was not much different in the rest of the world. Patients improved and were rapidly dischargedfrom mental institutions causing workforce reductions. I was sitting on a state employee job application evaluation committee and witnessed these events. It was also exciting to see rapid changes in administration at the state hospital. Since what happened in Delaware also happened nationally, this was a national event and should be recognized as such. The following few pages are to remember the details. Major changes made psychiatry more of an accepted medical specialty. Psychiatrists are no longer "outsiders." I would be glad to answer any questions about the information presented here.

Framing choice: The origins and impact of consumer rhetoric in US health care debates.

This paper examines the origins of consumerist discourse in health care from a communication perspective via a historical textual analysis of health writing in popular magazines from 1930 to 1949. The focus is on Consumers Union's Consumer Reports and the American Medical Association's lay health magazine, Hygeia. Findings from Consumer Reports show that the consumer movement of the 1930s-40s staunchly advocated for universal health insurance. Whereas consumer rights language nowadays tends towards individual choice and personal responsibility, consumerism in health care during that era articulated ideas about consumer citizenship, framing choice and responsibility in collectivist terms and health care as a social good. This paper also illuminates the limits and weaknesses of a central tenet in consumerism-freedom of choice-by analyzing stories in Hygeia about the doctor-patient relationship. A textual analysis finds that the AMA's justification in the 1930s-40s against socialized medicine, i.e., the freedom to choose a doctor, was in practice highly controlled by the medical profession. Findings show that long before the rhetoric of the "empowered consumer" became popular, some patients exercised some choice even in an era when physicians achieved total professional dominance. But these patients were few and tend to occupy the upper socioeconomic strata of US society. In reality choice was an illusion in a fee-for-service era when most American families could not afford the costs of medical care.

Enemy of the people/enemy of the state: two great(lyiInfamous) doctors, passions, and the judgment of history.

If the aphorism "history will be the judge" is deployed, the active agent of this formulation is the historian. Comparing two great(ly infamous) doctors,John C. Cutler and Alan Berkman, the article considers how historians balance digging for sources, creating meaningful narrative, and acknowledging our own beliefs that embed in the judgments we make. The article explores our responsibility for balance and moral judgment at the same time. Cutler, admonished for his role in the infamous sexually transmitted diseases studies in Tuskegee and Guatemala, also was a well-respected researcher and teacher. Berkman, renowned for his success in global HIV/AIDs activism, was also only the second physician in U.S. history to be charged with accessory to murder after the fact and who served seven hard years for bombings and robbery. The author considers her relationship to these physicians and the effort to create a passionate historical practice.

Clinical research before informed consent.

Clinical research with patient-subjects was routinely conducted without informed consent for research participation prior to 1966. The aim of this article is to illuminate the moral climate of clinical research at this time, with particular attention to placebo-controlled trials in which patient-subjects often were not informed that they were participating in research or that they might receive a placebo intervention rather than standard medical treatment or an experimental treatment for their condition. An especially valuable window into the thinking of clinical investigators about their relationship with patient-subjects in the era before informed consent is afforded by reflection on two articles published by psychiatric researchers in 1966 and 1967, at the point of transition between clinical research conducted under the guise of medical care and clinical research based on consent following an invitation to participate and disclosure of material information about the study. Historical inquiry relating to the practice of clinical research without informed consent helps to put into perspective the moral progress associated with soliciting consent following disclosure of pertinent information; it also helps to shed light on an important issue in contemporary research ethics: the conditions under which it is ethical to conduct clinical research without informed consent.