When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

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.

Is it right to talk about patient safety 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.

Networked Health Care Governance in the European Union.

The European Union (EU) increasingly resorts to new forms of governance to establish unified health and welfare policies without member states having to transfer their sovereignty to a supranational level. European Administrative Networks are important instruments in the toolbox of new forms of governance, dealing with rulemaking, rule monitoring, and rule enforcement. Operating beyond, but not above, the state, European networks of national administrative units allow for interaction and exchange to coordinate national responses to increased interaction across their borders. The authors use social network analysis to uncover the pattern of interaction among national representatives in two central EU health care networks. Their analysis finds not only that the network in the area of pharmacovigilance has more competences, resources, and capacity to improve the enforcement of EU rules than the network regarding cross-border health care but also that the driving forces behind network interaction appear to differ quite a bit as well. While the supranational character becomes apparent in the former network, network interactions in the latter seem aimed at mitigating the impact of patient mobility rather than improving cross-border health care take up.

How the convention on human rights affects a patient's right to life.

Richard Griffith, Senior Lecturer in Health Law at Swansea University, continues his series on human rights and health care and considers the right to life under Article 2 of the European Convention on Human Rights (1950).

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.

Attitudes towards gossip and patient privacy among paediatric nurses.

BACKGROUND: Nurses providing 24-h care for the primary caregiver role have a number of significant roles to play in potential problems or conflicts associated with patient privacy and confidentiality. RESEARCH OBJECTIVES: The objective of the study is to determine the prevailing attitudes towards gossip and the patient privacy practices of nurses working in paediatric units. RESEARCH DESIGN: A descriptive and cross-sectional design was used. A Descriptive Characteristics Form, a Gossip and Rumour Attitude Scale and a Patient Privacy Scale were used to collect data. PARTICIPANTS AND RESEARCH CONTEXT: A total of 112 paediatric nurses working in Turkey were included in the study. The response rate was 79.43%. ETHICAL CONSIDERATIONS: Permission to conduct the study was obtained from the university's ethics committee. The participants were informed of the aim of the study, and voluntary participation, anonymous response and confidentiality were explained to them. FINDINGS: It was observed that nurses who had a higher education level, who were educated about patient privacy and who had read the patient rights regulations were more concerned about patient privacy. Negative correlations were found between the attitudes towards gossiping and the average scores on the patient confidentiality scale. Nurses who negatively defined gossip were more concerned about patient confidentiality. DISCUSSION: Privacy is important for securing and protecting the personal, physical and psychological things that are important and special for patients. It is argued that obstacles to maintaining the privacy of hospitalized children and adolescents are a tolerant attitude towards gossiping, a lack of education about patient privacy and insufficient information about patient's rights regulations and the Convention on the Rights of the Child. CONCLUSION: A nurse's knowledge about the provision of patient confidentiality affects their privacy practices. For this reason, regular training sessions are recommended in hospitals.

Supported decision making for people with mental health disorders in clinical practice: a systematic review.

Objectives: The Convention on the Rights of Persons with Disabilities (CRPD) was adopted at the United Nations Assembly in 2006. The main aim of the convention is to ensure equal rights for people with disabilities including the expression of people's own "will and preferences" concerning health treatment. Article 12 demands the respect of a person's "rights, will and preferences" (CRPD) and suggests supported decision making (SDM) when possible. The aim of this review was to gather information regarding the SDM implementation from a clinical perspective for people with mental health disorders.Methods: A systematic literature search was performed on electronic databases MEDLINE, PsycARTICLES, and PsycINFO using the keywords "supported decision making" and "UN convention on the rights of persons with disabilities" in March 2018.Results: Eleven articles were included in the final review, which focussed on three themes: (1) different models of SDM, (2) stakeholder views, and (3) challenges for implementation. A limited number of papers described clinical models that had good theoretical consistency with SDM. The main challenges of implementation related to critical situations when "will and preferences" are poorly understood or appear contradictory. Future studies should assess specific models of SDM implementation, including related outcomes and process measures.

Responsiveness and the Role of Rights in Medical Law: Lessons from Montgomery†.

Over time, medical law has moved away from paternalism in favour of an approach grounded in patients' rights. Using Montgomery v Lanarkshire Health Board (2015) as a case study, we offer a deeper analysis of this emerging approach. We argue that patients' rights should be evaluated in terms of their contribution to making medical law more socially responsive, by developing it to give effect to social needs and aspirations pertaining to health care. Although rights can play an important role in achieving social responsiveness, they also carry the risk of entrenching approaches unrepresentative of patients' actual needs and empirical realities. This is evident in Montgomery, where the law, despite being derived from General Medical Council (GMC) guidance, has effects that differ significantly from the GMC's goals. Drawing on socio-legal literature, we outline a new approach for guiding the use of rights in medical law focused on the functional consequences of rights in facilitating patients' aspirations, and the capacity of rights to respond to social and institutional contexts in which medical interaction occurs. We conclude by showing how this approach, applied to informed consent, would produce a different and arguably a superior duty, providing a sounder basis for responding to patient needs.

[Transfert to psychiatric hospital†: is deprivation of liberty for purposes of assistance the rule†?] / Transfert vers l'hôpital psychiatrique†: le placement à des fins d'assistance est-il la règle†?

Switzerland has a high rate of legal measures of constraint by international standard. Beside the incorporation of legal, medical and economic elements, the physician may be asked on what it means to be a care giver and to be free, because his decision could private his patient of a fundamental human right. The deprivation of freedom for purposes of assistance is helpful in some clinical situations but remains a controversial issue. We have to do our due diligence when assessing the patient, notably his capacity of discernment, and discuss with him and his relatives other treatments without legal constraint. The advance directives and the joint plan of crisis should be tools to increase patients' autonomy and to decrease the coercive measures.

La Suisse a un taux élevé de mesures de contrainte en comparaison internationale. Outre l'intégration des aspects juridiques, médicaux et économiques, le médecin est questionné sur sa posture de soignant, son rapport à sa mission et à sa conception de la liberté, car la décision entraîne une privation d'un droit fondamental pour son patient. Le placement à des fins d'assistance est une mesure qui reste controversée, mais utile dans certaines situations cliniques. Il nous oblige à une évaluation fine des patients, à estimer leur capacité de discernement et à envisager avec eux et leurs proches d'éventuelles alternatives au traitement sous contrainte. Les directives anticipées et les plans conjoints de crise apparaissent comme des outils de promotion de l'autonomie des patients et de diminution des mesures coercitives.

[Non-compulsory outpatient care programmes: two clinical illustrations]. / Programmes de soins ambulatoires sans consentement : deux illustrations cliniques.

The act of 5 July 2011 pertaining to the rights and the protection of persons under psychiatric care presents the possibility for compulsory care, without the need for full hospitalisation. Patients can be cared for through partial hospitalisation (day hospital and part-time therapeutic clinic) or in a medical-psychological centre. Treatments and all care are detailed in a care programme. This programme is sent, like all certificates, to the regional health agency and the prefecture in the case of psychiatric care by decision of the State representative, or to the hospital director for psychiatric care at the request of a third party. We propose two clinical vignettes.

Who should pay for the continuity of post-trial health care treatments?

BACKGROUND: The bioethical debate in the world on who should pay for the continuity of post-trials treatment of patients that have medical indication remains obscure and introduces uncertainties to the patients involved in the trials. The continuity of post-trial treatment was only incorporated in the 2000s by the Helsinki Declaration. The Universal Declaration on Bioethics and Human Rights, published in 2006, points out that post-trial continuity may present a broader scope than just the availability of the investigated medicine. In the latest version of this Declaration, in 2013, it was stated that "prior to the start of the clinical trial, funders, researchers and governments of the countries participating in the research should provide post-trial access for all participants who still require an intervention that was identified as beneficial. This information should also be disclosed to participants during the informed consent process". However, a systematic review on the registration of phase III and IV clinical trials, from the clinical trials website, demonstrated that the understanding of the various guidelines and resolutions is conflicting, generating edges in the post-trial setting. For the health authorities of countries where clinical trials take place, the uncertainties about the continuity of the treatments generate gaps in care and legal proceedings against health systems, which are forced to pay for the treatments, even if they are not included in the list of medicines available to the population. METHODS: Fifty-one representatives from the health, judicial, legislative, patient and academic organizations of eight countries of Latin American and South Korea took part in a meeting in Chile, in 2017, to discuss the responsibility of the treatment continuation after clinical trials. From a hypothetical case of development of a new drug and its studies of efficacy and safety, the participants, divided in groups, proposed recommendations for the problem and pointed out the pros and cons of adopting each recommendation. The groups were, afterwards, confronted by a simulated jury and, finally, issued a final recommendation for the problem. Then, an analysis was made on the content of the recommendations and the pros and cons in adopting conservative or liberal positions, besides the possible impacts of a restrictive regulation regarding the conduction of clinical trials, pointed out by the groups, before and after the simulated jury. RESULTS: The theme was widely discussed and about 12 recommendations were proposed by the participants. The main ones took into account aspects related to patients' rights, economic factors and the development of new technologies, above the position of industry and research institutes, as well as the legislation in force in each country. CONCLUSION: The countries of Latin America and South Korea, currently, do not have laws that address patients' rights, moreover, there is no definition on who should be responsible for post-trial treatments. It is suggested that the World Health Organization issue a resolution recommending that all associated countries determine that the pharmaceutical and medical device industries, or those that sponsored it, should continue to provide treatment to all patients who participated in clinical trials and have medical indication to the continuity.

Waiting for common-law solutions for the most vulnerable populations' healthcare access.

BACKGROUND: The state of populations' health is linked to their access to quality healthcare. Best achieving this primary condition - a health, social and humanitarian condition - is an ongoing public policy objective. Although significant effort goes into this, do public policies sufficiently take into account the state of health of the most vulnerable populations? In France, reducing the non-take-up (NTU) of healthcare is a priority in current national health insurance policy. Under the local plans to tackle non-take-up, lack of understanding and exit from the system (PLANIR), national health insurance is currently rolling out a regional and partnership-based intervention framework in order to prevent NTU of healthcare by welfare clients. This social investment is unprecedented, yet the impact of the framework on the most vulnerable populations still seems to be limited. METHOD: The study of this example is based on monitoring of the framework's general implementation. This task was entrusted to the research team co-founded by the author, ODENORE (Observatory for the Non-take-up of Social Rights and Public Services). It is organized in four parts: quantitative monitoring of the detection and addressing of non-take-up situations (n=160,000 questionnaires); analysis of the results through qualitative interviews with beneficiaries and individuals who rejected the framework (n=365 interviews); analysis of the framework's implementation, using qualitative interviews and participant observations at the services in charge of the framework's implementation (n=18 collective interviews across three sites), and an analysis of the partnership through collective interviews with all the actors in the areas involved in the framework (three sites). RESULTS: The analysis shows that the integration of the most vulnerable populations' state of health into a common-law framework for intervention is hindered by three limitations: the framework's neutrality regarding public decisions and non-decisions that exacerbate social and regional health inequalities; its organizational design, which does not take into account the need for long-term medical-psycho-social care; and the absence of regulation capable of bringing together and coordinating the actors working towards healthcare access locally but with different populations. CONCLUSION: The difficulties of integrating the most vulnerable populations into a common-law framework such as the one proposed by the national health insurance do not seem insurmountable-provided, that is, that the regulatory authority (the regional health agencies) are willing and able to make it a strategic organizational objective at local level.

Construction of patients' position in Norway's Patients' Rights Act.

BACKGROUND: Since the adoption of the Universal Declaration of Human Rights by the United Nations in 1948, human rights as set out in government documents have gradually changed, with more and more power being transferred to individual. OBJECTIVES: The aim of this article is to analyze how the position of the patient in need of care is constructed in Norway's renamed and revised Patients' and Service Users' Rights Act (originally Patients' Rights Act, 1999) and published comments which accompanying this legislation from the Norwegian Ministry of Health and Care Service. RESEARCH DESIGN: A constructivist design was used, and Fairclough's critical discourse approach was adopted to analyze the text of the Patients' and Service Users' Rights Act and comments. FINDINGS: The analysis identified three discourses: (a) political discourse, containing ethical discourses about priority and economy, in which patients are constructed as powerless individuals; (b) expert discourse, containing a theme about patients' trust in the healthcare team and its knowledge, in which patients are constructed as helpless individuals lacking knowledge; and (c) patient participation and patient autonomy discourse, containing ethical discourses about decision-making, in which patients are constructed not only as individuals with needs and rights but also as "troublesome." CONCLUSION: Dominant paternalistic discourses in the legal text validate the power of medicine, the healthcare system, and heath personnel over the needs, rights, participation, and autonomy of the patient.

[Involuntary hospitalization: A survey of liberty and custody judges]. / Soins psychiatriques sans consentement : une enquête auprès des juges des libertés et de la détention.

The procedure of involuntary hospitalization in France has been recently modified by the law of 5 July 2011. Since that time, a liberty and custody judge has been appointed to guarantee the rights of psychiatric inpatients and to prevent abusive hospitalizations. Currently, for one involuntary hospitalization in ten a release is decided by the liberty and custody judge although psychiatrists consider that psychiatric care is necessary. In order to improve our understanding of the role of liberty and custody judges, and how they make their decisions, we conducted a qualitative survey of liberty and custody judges in the Tribunal de Grande Instance of Lille. Three judges were questioned, based on a semi-structured interview. Judges' responses have highlighted the need for psychiatrists to strictly respect the legal procedures and to accurately describe the clinical signs and symptoms that justify the procedure of involuntary hospitalization in the medical certificates. The intervention of liberty and custody judges for patients with psychiatric disorders represents a breakthrough for patients' rights in France, reflecting that they are considered as citizens, with the same rights as others. Nonetheless, this new mission needs a progressive learning, based on mutual exchanges with doctors and caregivers.

The Vexed Question of the Voluntary Patient.

The current statutory framework in Ireland provides certain key safeguards for people who are admitted involuntarily for mental health treatment and care; the same legislation makes scant reference to the person who seeks treatment and care on a voluntary basis. This has led to concerns in relation to deprivation of liberty and to non-consensual medical treatment for these patients. This article seeks to examine the development of the law in relation to voluntary patients in Ireland and to assess in light of recent developments where Ireland now stands in terms of protecting the right of the voluntary patient to liberty.

Legal Regulation of Psychosurgery: A Fifty-State Survey.

Following the rise and fall of lobotomy, a majority of U.S. states took legislative aim at psychosurgical procedures. This article canvasses, organizes, and analyzes the existing body of United States statutes and regulations mentioning psychosurgery. Many states regulate psychosurgery without defining the term; existing definitions are imprecise, but many would arguably apply to contemporary procedures like deep brain stimulation. Common to many states are restrictions on surrogate consent to psychosurgery, codifications of patients' consent or refusal rights, and situation-specific bans on the practice targeting certain contexts of vulnerability. Many states have only a handful of scattered laws bearing on psychosurgery, but a few have wide-ranging and well-integrated regulatory regimes. In reviewing these laws we perceive much room for harmonization and modernization. Greater consistency in protecting vulnerable persons from troubling uses of psychosurgery is achievable even alongside an effort to remove undue legal obstacles impeding patient access to potentially therapeutic procedures. Our hope in surveying current psychosurgery law is to inaugurate a conversation on how best to shape its future.

Euthanasia: Global Scenario and Its Status in India.

The legal and moral validity of euthanasia has been questioned in different situations. In India, the status of euthanasia is no different. It was the Aruna Ramachandra Shanbaug case that got significant public attention and led the Supreme Court of India to initiate detailed deliberations on the long ignored issue of euthanasia. Realising the importance of this issue and considering the ongoing and pending litigation before the different courts in this regard, the Ministry of Health and Family Welfare, Government of India issued a public notice on May 2016 that invited opinions from the citizens and the concerned stakeholders on the proposed draft bill entitled The Medical Treatment of Terminally Ill Patients (Protection of Patients and Medical Practitioners) Bill. Globally, only a few countries have legislation with discreet and unambiguous guidelines on euthanasia. The ongoing developments have raised a hope of India getting a discreet law on euthanasia in the future.

Individualised Claims of Conscience, Clinical Judgement and Best Interests.

Conscience and conscientious objections are important issues in medical law and ethics. However, discussions tend to focus on a particular type of conscience-based claim. These types of claims are based upon predictable, generalizable rules in which an individual practitioner objects to what is otherwise standard medical treatment (for example, the objections recognised in the Abortion Act). However, not all conscience based claims are of this type. There are other claims which are based not on an objection to a treatment in general but in individual cases. In other words, these cases may involve practices which the doctor does not usually object to but does so in this instance on these facts. This paper will explore these types of conscience-based claims in two ways. First, it will explore whether these types of individualised conscience-based claims are really conscience claims at all. Second, it will explore how these claims interact with the other sorts of judgements we expect doctors to make in these cases (things like professional standards, clinical judgment and the best interests of the patient).

[The duty to inform in the Chilean legislation]. / Actualidad del deber de informar en Chile.

The new Chilean regulation about patients' rights and duties is generating a significant change in the information that health care professionals must provide to their patients. This issue will gravitate on medical liability. If this duty is accomplished incorrectly, professionals would fall into an illicit act and become liable to lawsuits and compensations to patients. This article provides a panoramic view about the grounds and content of the duty to inform and how judges are regulating the issue.