AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.
Confidentiality , Parents , Humans , Adolescent , Confidentiality/legislation & jurisprudence , Confidentiality/ethics , Male , United States , Disclosure/legislation & jurisprudence , Disclosure/ethics , Personal Autonomy , Parental Consent/legislation & jurisprudence , Parental Consent/ethics , Patient Rights/legislation & jurisprudence , Child , Privacy/legislation & jurisprudence , Electronic Health Records/ethics , Electronic Health Records/legislation & jurisprudence , Access to Information/legislation & jurisprudence , Access to Information/ethics
Abstract: Recent events have brought the debate on end-of-life issues to the forefront, particularly regarding the principle of self-determination for depressed patients. Belgian legislation, in fact, allows for requesting euthanasia when patients, capable of expressing their own will consciously, suffer in an unbearable manner and find no meaning in continuing their existence, even in the absence of incurable and/or severely debilitating conditions. The state of the art is an increasing number of people who die from euthanasia. An open question is when a situation can be defined as unbearable. Moreover, does such an assessment necessarily lead to death, or are there other solutions? In our opinion, such a practice should be limited to prevent inappropriate applications that could lead to infringing depressed patients' rights.
Depression , Humans , Depression/psychology , Depression/etiology , Terminal Care/psychology , Personal Autonomy , Euthanasia/legislation & jurisprudence , Belgium , Patient Rights
John Tingle, Lecturer in Law, Birmingham Law School, University of Birmingham and Angela Eggleton, Teaching Fellow, Birmingham Law School, University of Birmingham, discuss some reports on patient rights.
Patient Rights , Patient Safety , Humans , Patient Rights/legislation & jurisprudence , United Kingdom , State Medicine
Encontro com as Especialistas Roseli Calil, médica neonatologista da Universidade Estadual de Campinas (Unicamp); Eduarda Ribeiro dos Santos, enfermeira e advogada, docente na Faculdade Israelita Albert Einstein; Aline Hennemann, enfermeira especialista na área materno infantil, assessora da CACRIAD/DGCI/SAPS/MS; e Zeni Lamy, médica neonatologista da Universidade Federal do Maranhão (UFMA).
Infant, Newborn , Patient Rights/legislation & jurisprudence , Patient Safety/legislation & jurisprudence , Prenatal Care , Maternal-Child Health Services , Kangaroo-Mother Care Method , Intensive Care, Neonatal , Child Care/legislation & jurisprudence
La entrada en vigor de la Ley Orgánica 3/2021 sobre eutanasia en España (2021), ha propiciado un debate de relevancia en el ámbito de la bioética, como es el de la objeción de conciencia (OC) de los profesionales de la salud. Ahora bien, a pesar de que la literatura científica ha abordado esta cuestión, lo cierto es que la comprensión de los motivos subyacentes que impulsan a los profesionales a objetar no está del todo clara. Diversos autores han destacado que la OC halla sus fundamentos en creencias personales, ética profesional, aspectos emocionales y dinámicas del propio sistema. A su vez, se ha observado cómo hay posiciones diversas sobre la legitimidad de la OC, generando debates sobre su validez.Los objetivos de este artículo son revisar el concepto objeción de conciencia en el ámbito sanitario; analizar los factores que motivan este derecho; examinar las consecuencias de la OC en la carga asistencial de los profesionales no objetores; y explorar su posible conflicto ético con la justicia distributiva en la atención sanitaria. Por último, se reflexionará sobre la posibilidad de la OC institucional y sus posibles consecuencias en los derechos de pacientes y trabajadores.(AU)
L'entrada en vigor de la Llei Orgànica 3/2021 sobre l'eutanàsia a Espanya (2021) ha suscitat un debat rellevant en l'àmbit de la bioètica, com és el de lobjecció de consciència(OC) dels professionals de la salut. Tanmateix, malgrat que la literatura científica ha abordat aquesta qüestió, és cert que la comprensió dels motius subjacents que impulsen els professionals a objectar no està del tot clara. Diversos autors han destacatque lOC troba els seus fonaments en creences personals, ètica professional, aspectes emocionals i dinàmiques del propi sistema. Al seu torn, s'ha observat com hi ha posicions diverses sobre la legitimitat de lOC, generant debats sobre la seva validesa. Els objectius d'aquest article són revisar el concepte dobjecció de consciència en l'àmbit sanitari; analitzar els factors que motiven aquest dret; examinar les repercussions de lOC en la càrrega assistencial dels professionals no objectors; i explorar el seu possible conflicte ètic amb la justícia distributiva en l'atenció sanitària. Finalment, es reflexionarà sobre la possibilitat de lOC institucional i les seves possibles repercussions en els drets dels pacients i treballadors.(AU)
The enactment of Organic Law 3/2021 on euthanasia in Spain has sparked a significant debate in the field of bioethics, namely the issue of conscientious objection (CO) among healthcare professionals. However, despite the scientific literature addressing this matter, the understanding of the underlying reasons that drive professionals to object is not entirely clear. Several authors have highlighted that CO is rooted in personal beliefs, professional ethics, emotional aspects, and dynamics within the healthcare system. Simultaneously, there have been varying stances on the legitimacy of CO, leading to debates regarding its validity.The objectives of this article are to review the concept of conscientious objection in the healthcare context, analyze the factors motivating this right, examine the consequences of CO on the workload of non-objecting professionals, and explore its potential ethical conflict with distributive justice in healthcare. Finally, we will reflect on the possibility of institutional CO and its potential implications for the rights of patients and healthcare workers.(AU)
Humans , Male , Female , Patient Rights , Organic Law , Euthanasia/ethics , Ethics, Medical , Ethics, Professional , Awareness , Spain , Bioethical Issues , Bioethics
Patient safety is high on the policy agenda internationally. Learning from safety incidents is a core component in achieving the important goal of increasing patient safety. This study explores the legal frameworks in the countries to promote reporting, disclosure, and supporting healthcare professionals (HCPs) involved in safety incidents. A cross-sectional online survey was conducted to ascertain an overview of the legal frameworks at national level, as well as relevant policies. ERNST (The European Researchers' Network Working on Second Victims) group peer-reviewed data collected from countries was performed to validate information. Information from 27 countries was collected and analyzed, giving a response rate of 60%. A reporting system for patient safety incidents was in place in 85.2% (N = 23) of countries surveyed, though few (37%, N = 10) were focused on systems-learning. In about half of the countries (48.1%, N = 13) open disclosure depends on the initiative of HCPs. The tort liability system was common in most countries. No-fault compensation schemes and alternative forms of redress were less common. Support for HCPs involved in patient safety incidents was extremely limited, with just 11.1% (N = 3) of participating countries reporting that supports were available in all healthcare institutions. Despite progress in the patient safety movement worldwide, the findings suggest that there are considerable differences in the approach to the reporting and disclosure of patient safety incidents. Additionally, models of compensation vary limiting patients' access to redress. Finally, the results highlight the need for comprehensive support for HCPs involved in safety incidents.
Liability, Legal , Medical Errors , Humans , Medical Errors/prevention & control , Cross-Sectional Studies , Patient Safety , Patient Rights
INTRODUCTION: In emergency health care services, patient satisfaction is one of the fundamental indicators of quality emergency care, making it essential to identify factors that can impact this component of care. This study aimed to determine emergency service patients' attitudes toward using patient rights, their satisfaction levels with emergency service, and related factors. METHODS: The cross-sectional study was conducted with 382 patients who presented to the emergency department between November 2022 and March 2023. Data were collected using the Patient Description Form, the Emergency Department Patient Satisfaction Scale, and the Scale of Patient Rights Using Attitude. The study adhered to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist for reporting. RESULTS: The mean score of the Emergency Department Patient Satisfaction Scale was 53.88 ± 6.88 (minimum score, 30; maximum score, 68), and the mean score of the Scale of Patient Rights Using Attitude was 108.89 ± 11.90 (minimum score, 73; maximum score, 135). As a result of the regression analysis, it was found that the Scale of Patient Rights Using Attitude scores and frequency of ED visits significantly contributed to the Emergency Department Patient Satisfaction Scale scores. Younger patients who had higher educational status presented to the emergency department more frequently and had chronic diseases were associated with positive attitudes about using patient rights and had higher levels of ED patient satisfaction (P < .001). DISCUSSION: The study has provided valuable information for assessing the attitudes of ED patients toward exercising their patient rights and their satisfaction levels. Respect for patient rights and their effective utilization by patients can enhance the quality of ED services and increase patient satisfaction.
Emergency Service, Hospital , Patient Satisfaction , Humans , Cross-Sectional Studies , Patient Rights , Personal Satisfaction
Castilla del Pino ejerció un indudable liderazgo intelectual sobre varias generacio-nes de españoles en el último tercio del siglo XX, y de forma particular ejerció su función de intelectual aplicado a la práctica clínica de lo mental. Esta tarea constituyó un verdadero ma-gisterio para los profesionales interesados en prácticas clínicas rigurosas, respetuosas con la dignidad y los derechos de los pacientes. En este trabajo se revisan algunas de sus principa-les aportaciones como intelectual a la práctica psiquiátrica y la psicoterapia. Específicamen-te, se abordan sus contribuciones al estudio de la influencia de la ideología en la psicoterapia y la ideología de la locura y su impacto en la práctica psiquiátrica en contexto hospitalario. Sus observaciones y recomendaciones significan una magnífica guía para el ejercicio de la observación rigurosa, la reflexión y el pensamiento crítico frente al dogmatismo. (AU)
Castilla del Pino was an undoubted intellectual leader over several generations of Spaniards in the last third of the 20th century. He specifically played this role as an intellectual in the field of the mental health practice. This task constituted a true teaching for professionals interested in rigorous clinical practices, respectful of the dignity and rights of patients. This paper reviews some of his main contributions as an intellectual to psychiatric practice and psychotherapy. It specifically addresses his contributions to the study of the influence of ideology in psychotherapy, as well as the ideology of madness and its impact on psychiatric practice in a hospital context. His observations and recom-mendations are an excellent guide to the exercise of rigorous observation, reflection and critical thinking facing any dogmatism. (AU)
Humans , Psychotherapy , Patient Rights , Mental Health , Deinstitutionalization , Institutionalization
El artículo pone en contexto las estadísticas de veinte años desde la despenalización de la eutanasia en Bélgica. En esta reconstrucción se analizan los aspectos centrales de la política, tales como su carácter democrático y la protección de la objeción de conciencia. A menudo discutido de forma aislada, este artículo plantea el fin de vida voluntario como parte de un programa paliativo que, a su vez, integra una visión más amplia, como se refleja en el paquete de regulaciones del año 2002. Además de delinear ciertas consecuencias deontológicas, entre otras, el artículo subraya el carácter excepcional de la eutanasia, limitándose a casos debidamente calificados de sufrimiento físico o psíquico, pero que de manera significativa reivindica el respecto de la autonomía de la persona. Con todo, el artículo invita a considerar códigos morales múltiples de cara a uno de los pocos eventos de los que tenemos certeza: la muerte.(AU)
L'article posa en context les estadístiques de vint anys des de la despenalització de l'eutanàsia a Bèlgica. En aquesta reconstrucció s'analitzen els aspectes centrals de la política, com el seu caràcter democràtic i la protecció de l'objecció de consciència. Sovint discutit de forma aïllada, aquest article planteja la fi de vida voluntària com a part d'un programa pal·liatiu que, al seu torn, integra una visió més àmplia, com es reflecteix en el paquet de regulacions de l'any 2002. A més de delinear certes conseqüències deontològiques, entre d'altres, l'article subratlla el caràcter excepcional de l'eutanàsia, limitant-se a casos degudament qualificats de patiment físic o psíquic, però que de manera significativa reivindica el respecte de l'autonomia de la persona. Amb tot, l'article convida a considerar codis morals múltiples de cara a un dels pocs esdeveniments dels quals tenim certesa: la mort.(AU)
The article brings into context the statistics of twenty years since the decriminalization of euthanasia in Belgium. In reconstructing this process, the central aspects of the policy are analysed, such as its democratic nature and the protection of conscientious objection. Often discussed in isolation, this article considers voluntary end of life as part of a palliative program that, in turn, integrates a broader vision, as reflected in the 2002 package of regulations. In addition to outlining some of its consequences, deontological and otherwise, the article underlines the exceptional use of euthanasia, limited to duly qualified cases of physical or mental suffering, but that it also significantly increases respect for the autonomy of the person. All in all, the article invites us to consider multiple moral codes in the face of one of the few events of which we are certain: death.(AU)
Humans , Hospice Care/ethics , Euthanasia/ethics , Euthanasia/legislation & jurisprudence , Ethics, Medical , Personal Autonomy , Patient Rights , Belgium , Bioethical Issues , Bioethics , Ethical Theory , Right to Die , Death
O presente artigo expõe um panorama geral da Tomada de Decisão Compartilhada (TDC), considerada cada vez mais como a melhor forma para envolver os pacientes no processo de decisão sobre seus cuidados em saúde. Contudo, a despeito do amplo reconhecimento internacional, a TDC ainda não se encontra amplamente implementada na prática clínica brasileira, sendo o consentimento informado o modelo de tomada de decisão mais comumente adotado pelos profissionais de saúde. Assim, este trabalho, após esclarecer as definições em torno da TDC, apresenta instrumentos para sua aplicação e as razões pelas quais essa nova forma de tomar decisões deve ser preferível ao consentimento informado.(AU)
L'actual article exposa una visió general de la Presa de Decisions Compartides (PDC), cada vegada més considerada com la millor manera d'involucrar els pacients en el procés de decisió sobre la seva cura sanitària. No obstant això, malgrat el reconeixement internacional ampli, la PDC encara no està àmpliament implementada en la pràctica clínica brasilera, essent el consentiment informat el model de presa de decisions més comunament adoptatpels professionals de la salut. Així, aquest treball, després de clarificar les definicions al voltant de la PDC, presenta instruments per a la seva aplicació i les raons per les quals aquesta nova forma de prendre decisions ha de ser preferible al consentiment informat.(AU)
Este artículo presenta una visión general de la Toma de Decisiones Compartida (TDC), considerada cada vez más como la mejor manera de involucrar a los pacientes en el proceso de toma de decisiones sobre su atencion de salud. Sin embargo, a pesar del amplio reconocimiento internacional, la TDC aún no está ampliamente implementada en la práctica clínica brasileña, siendo el consentimiento informado el modelo de toma de decisiones más comúnmente adoptado por los profesionales de la salud. Así, este trabajo, tras aclarar las definiciones en torno a la TDC, presenta instrumentos para su aplicación y las razones por las que esta nueva forma de tomar decisiones debe ser preferible al consentimiento informado.(AU)
This article presents an overview of Shared Decision Making (SDM), increasingly considered the best way to involve patients in the decision-making process about their health care. However, despite wide international recognition, SDM is still not widely implemented in brazilian clinical practice, with informed consent being the decision-making model most commonly adopted by health professionals. Thus, this work, after clarifying the definitions around SDM, presents instruments for its application and the reasons why this new way of making decisions should be preferable to informed consent.(AU)
Humans , Male , Female , Decision Making , Informed Consent , 50230 , Patient Rights , Physician-Patient Relations , Bioethics , Bioethical Issues , Ethics, Medical , Brazil
En este artículo reflexionamos sobre la potencialidad terapéutica de los nuevos desarrollos de la Inteligencia Artificial en el ámbito de la salud mental, en particular en la prevención de conductas suicidas. En primer lugar, analizamos los aspectos tecno-científicos más relevantes del Machine Learning en el entorno de las Redes Sociales, las aplicaciones móviles y los chatbots, así como las ventajas e inconvenientes de esta nueva Psiquiatría Computacional. A continuación, consideramos los límites y dificultades en el uso de estas tecnologías desde una perspectiva ética, además del marco legal para que estas aplicaciones preventivas sean garantistas en lo que a eficacia, seguridad, privacidad, transparencia, responsabilidad y equidad se refiere. Si bien las amenazas son considerables, concluimos que con una correcta identificación y gestión de las mismas el alcance terapéutico de estas herramientas se antoja alentador.(AU)
En aquest article reflexionem sobre la potencialitat terapèutica dels nous desenvolupaments de la Intel·ligència Artificial en l'àmbit de la salut mental, especialment en la prevenció de conductes suïcides. En primer lloc, analitzem els aspectes tecno-científics més rellevants de l'Aprenentatge Automàtic en l'entorn de les Xarxes Socials, les aplicacions mòbils i els chatbots, així com els avantatges i inconvenients d'aquesta nova Psiquiatria Computacional. A continuació, considerem els límits i les dificultats en l'ús d'aquestes tecnologies des d'una perspectiva ètica, a més del marc legal perquè aquestes aplicacions preventives siguin garantistes en qüestions d'eficàcia, seguretat, privadesa, transparència, responsabilitat i equitat. Toti que les amenaces són considerables, concloem que amb una correcta identificació i gestió d'aquestes, el potencial terapèutic d'aquestes eines sembla prometedor.(AU)
In this article we reflect on the therapeutic potential of the new developments of Artificial Intelligence in the field of mental health, particularly in the prevention of suicidal behavior. First, we analyze the most relevant techno-scientific aspects of Machine Learning in the environment of Social Networks, mobile applications and chatbots, as well as the advantages and disadvantages of this new computational psychiatry. Next, we consider the limits and difficulties in the use of these technologies from an ethical perspective, in addition to the legal framework so that these preventive applications are guarantees in terms of efficacy, security, privacy, transparency, responsibility and fairness. Although the threats are considerable, we conclude that with proper identification and management of them, the therapeutic scope of these tools seems encouraging.(AU)
Humans , Artificial Intelligence , Suicidal Ideation , Suicide , Suicide/legislation & jurisprudence , Social Networking , Patient Rights , Bioethics , Ethics, Medical , Mental Health , Disease Prevention , Psychiatry , Mobile Applications/trends
Humans , Male , Female , Pediatrics , Ethical Theory , Knowledge , Patient Rights , Information Technology , Bioethics , Moral Obligations , Spain
