Purpose: Patients living with advanced heart failure experience dyspnea, fatigue, poor quality of life, depression and cognitive impairment which may threaten their ability to provide informed consent to undergo heart transplant (HTx) or mechanical support (LVAD). Using qualitative and quantitative methods, we asked how patients with advanced heart failure make decisions regarding HTx and LVAD. The variables chosen to reflect the elements of consent included quality of life and symptom severity (voluntariness), depression and cognitive impairment (capacity) and treatment preferences (decision-making). Methods: 76 patients enrolled in the quantitative arm completed the Minnesota Living with Heart Failure Questionnaire; Visual Analog scales for dyspnea, fatigue and overall health; Beck Depression Inventory; Montreal Cognitive Assessment; Standard Gamble and Time Tradeoff. Qualitative methods were used to discover concepts, relationships and decision-making processes described by 17 of the 76 patients considering HTx and LVAD. Results: Patients reported poor quality of life and high symptom severity scores which compelled them to consider surgery as a way to relieve unpleasant symptoms and improve quality of life. Although 30% of patients had evidence of depression and/or cognitive impairment, no patient was deemed incapable of decision-making. Patients were willing to take considerable risk (35%) and trade considerable time (4months) to improve their health. While heart failure-related concepts were important to the decision, entrustment emerged as the meaningful process for decision-making. Conclusions: Patients who participated in this study were capable of decision-making and understood the risks associated with the surgery. Voluntariness was diminished by disease but not absent, and decisions were free of coercion. These results suggest the entrustment model of decision-making is the dominant process for patients considering high-risk surgical procedures and meets criteria for informed consent. Understanding the process of decision-making will help clinicians support and enable treatment decisions made by patients living with advanced heart failure.

La problématique du consentement éclairé en santé mentale demeure au coeur des préoccupations des cliniciens, médecins spécialistes et médecins experts. Le travail auprès des cérébrolésés ou des patients souffrant de troubles mentaux graves, tout comme les questions qui me sont adressées depuis près de 20 ans par les médecins spécialistes, juristes ou résidents en psychiatrie, m’ont amenée à y réfléchir davantage. J’ajouterais que le constat personnel d’une compréhension des comportements, attitudes, motivations et jugements des patients vulnérables qui s’est modifiée au fil des ans, et le constat de l’importance de la notion du consentement vs le flou de sa définition et la fragilité des paramètres établis pour l’évaluer et la définir ont ravivé cette réflexion. La présente étude n’a aucunement pour but d’élaborer quelque règle de conduite que ce soit, ni de définir ce que devrait être le consentement éclairé en psychiatrie, mais plutôt d’explorer les dilemmes éthiques et les questionnements cliniques auxquels sont confrontés les médecins psychiatres afin de raviver une réflexion éthique qui semble s’estomper au profit de procédures juridiques et administratives. / In the mental health field, the topic of informed consent has always been among the most important problems to address for clinicians and psychiatrists. My clinical work with head injured patients and patients with severe mental health disorder, as well as all the questions addressed by physicians, residents or lawyers for the last decade lead me to think about it more deeply. Moreover, the personal observation of cognitively impaired patients and the fact that the concept of informed consent is so present compared to the lack of parameters to assess it has lead me to think about it otherwise. This study does not pretend to lead the actions or clinical behaviour, nor as it pretend to find a better definition of the concept of informed consent. It is only a way to explore some aspects of the complexity and clinical difficulties over the legal and administrative frame in which the medical field is evolving.

Le regime juridique instaure par le legislateur quebecois en matiere de consentement aux soins pour le majeur inapte merite d'etre revise. La determination de cette inaptitude produit des effets importants. Le constat d'inaptitude prive la personne majeure de son droit de prendre une decision a l'egard de sa sante, une des spheres les plus personnelles et privees de sa vie. Cette these utilise une approche transdisciplinaire, puisant a la fois dans le droit et la bioethique, pour evaluer de facon critique: l'encadrement de la determination de cette inaptitude, la determination juridique de cette inaptitude et les dispositions pertinentes du Code civil du Quebec qui s'appliquent en matiere de consentement aux soins lorsque cette inaptitude est constatee par le medecin. L'auteur conclut que l'objectif vise par le legislateur quebecois, le respect de la personne, n'est que partiellement atteint.

Source: Masters Abstracts International, Volume: 46-01, page: 0344. Adviser: Patricia Dolan Mullen. Includes bibliographical references (leaves xx-xx).

These days human being can find itself swamped with tons of information. It is neccessary to think over provided information given by a health care system and its efficiency. The thesis named Types of patient´s information needs is divided into a theoretical part and a practical part. Materials about nursing, medicine, psychology, sociology and a law issued in the Czech Republic and abroad were used to get necessary information about current condition of problematics. Two goals were set based on acquired knowledge. The first goal was to get to know about what type of information were requested and needed by patients and which they missed from nurses and doctors in ambulances and hospitals. The second goal was to double check if a personal perceiving of a given information corresponds with the real diagnosis. With respect to thesis goals, 9 research questions were formulated. Information regarding examined topic were acquired through research and investigation. As the means of collecting the data an interview was chosen. 23 interviews with patiens were done and the analyzed according to the Strausse theory. It was found, that patiens involved in this interview, take care about their health condition and that the information, which they perceive as important, are given to them by the medical staff. The information they have makes them more comfortable and they view it as a very important. It was as certained, that patients are very sensitive about the way the medical staff communicates with them and that their personality plays part in this process. The purpose of this thesis is to give an impulse to reinforce informing the patiens in a written form, but mainly to reinforce their personal contact with a doctor. Is is obvious, that the information and the way they get it is very important for patients.

Over the last decades the struggle for indigenous rights has accomplished great achievements within international law. In relation to development projects and resource extraction on indigenous lands, the principle of Free, Prior and Informed Consent (FPIC) has gained increased recognition and is today expressed as an important instrument to realize indigenous peoples’ right to self-determination. Nevertheless, empirical evidence have identified power asymmetries as one of the major obstacles for effective and meaningful FPIC implementation. This study investigates how power asymmetries emerge and affect the right to self-determination through the four FPIC requirements. Based on field research and by applying a relational approach, the study investigates a case of mining activities in northwestern Argentina where indigenous communities currently experience an increased interest in lithium deposits on their lands from transnational corporations. The study shows how relations characterized by dependency and clientelism create a situation where actors hold unequal power positions which permeate all FPIC requirements severely undermining the principle’s potential to fulfill its purpose. Lastly, based on the findings the study argues substantial underpinnings in terms of necessary preconditions are needed if FPIC are to be able to ensure self-determination.

O presente trabalho construiu-se a partir dos novos paradigmas que permeiam a relação médico-paciente. Se o profissional não mais se encontra em uma posição de superioridade (ao menos do ponto de vista fático) em face de seu paciente, que por sua vez está mais sensível em virtude das transformações oriundas da sociedade de massa, o elemento informação ganhou contornos importantíssimos, inserindo-se no núcleo principal da prestação, ao lado dos cuidados relativos à saúde propriamente ditos. Nesse contexto, foi proposta uma nova visão do dever de informar na relação médico-paciente, tratando a informação como uma obrigação autônoma, que gera de per se em caso de ausência ou vício responsabilização civil. A reparação, em tal perspectiva, surge a partir da violação do direito à liberdade: se a autodeterminação é um atributo da personalidade do paciente, a afronta a esse direito acarreta danos indenizáveis. Os limites do dever de informar, assim, desempenham relevante papel, pois demarcam a tênue linha que distingue a informação viciada (que ensejará responsabilização civil) daquela transmitida diligentemente. Assim, o conteúdo e a extensão da informação foram abordados, confrontando-se aspectos subjetivos, objetivos e buscando uma solução ao mesmo tempo viável (do ponto de vista prático), jurídica e justa. Como o trabalho trata essencialmente do dever de informar na relação médico-paciente e das consequências jurídicas derivadas do inadimplemento dessa obrigação, foram destrinchados todos os elementos que compõem esse complexo vínculo, passando por sua evolução histórica, pelos princípios, valores e direitos que permeiam e iluminam esta relação e, finalmente, pelos sujeitos que a compõem. Aspectos processuais atinentes à prova do cumprimento do dever de informação foram, ainda, examinados. Diversas questões polêmicas, tais como recusa de tratamento, direito a não saber, privilégio terapêutico, dentre outros, foram também debatidos. / This study is based on the new paradigms that permeate the doctor-patient relationship. If the medical professional no longer holds a superior position (at least from the factual point of view) vis a vis the patient who, on the other hand, is more aware to changes originating from doctor-patient relationship in the mass society, information availability has gained highly important contours, inserting itself into the core of services rendered, together with health care services themselves. In this context, this study proposes a new vision of the duty to inform in a doctor-patient relationship, treating information as an autonomous obligation, that, per se, results in liability in the case of its absence or flaws. The compensation, in such perspective, arises from breach of the right to autonomous choice: if self-determination is a characteristic of the patients personality, the disrespect of this right results in damages subject to indemnification. Therefore, the limits of the duty to inform perform a relevant role since they demarcate the fine line that distinguishes flawed information (that can incur liabilities) from that transmitted diligently. Thus, the contents and the extension of the information were addressed, comparing subjective and objective aspects and seeking a solution at the same time viable (from the practical viewpoint), legal and just. Since this study essentially deals with the duty to inform in the doctorpatient relationship and of the legal consequences derived from noncompliance of this duty, all factors that compose this complex link were carefully examined, reviewing its historical evolution, the principles, values and rights that permeate and elucidate this relationship and, finally, the parties involved. Legal evidential procedures related to fulfillment of the duty to inform were also examined. Various controversial topics such as the refusal to undergo treatment, the right to not be informed, therapeutic privilege, among others, were also discussed.

To be able to provide data collecting services to customers, service provides are required by law to design privacy policies and present their content to users as privacy notices that informs the user on privacy consequences and demonstrate that an explicit informed consent of the user has been collected before processing of the data. However, despite the increase in data collection by services and hence increase of privacy impact, yet privacy notices do not implement proper mechanisms that can assure that data subjects are well informed and their consent are provided with comprehension. The root of this problem is the fact that typically only theoretical description of what consent is and what it involves is offered by existing literature but no “practical” design guides are available for decision makers and practitioners on how to effectively integrate a targeted consent level in privacy notices. This thesis work addresses the need for explicit integration of consent in privacy notice designs by presenting the Extended Privacy Notice Design Space (XPNDS) construct that guides on explicitly incorporating different levels of consent in privacy notices. This thesis uses theories of eye movement in reading and technical references from computer vision for comprehension and attention determination to prove the feasibility of integrating higher level of consent in the design space that may guide to assured informed consent. The construct can be used by managers to communicate, practitioners to design, and regulators to analyze informed consent incorporation in privacy notice designs. Unlike most works available in the literature on consent which only provide theoretical opinion of what informed consent is, this work cast the conceptual consent guidelines in to a practical privacy notice design space to provide an XPNDS that guides to the practicality of achieving assured informed consent in privacy notices. It is the hope of the author that the XPNDS will be useful to both practitioners and academicians in incorporating informed consent in privacy notice designs to an assured level. / <p>Validerat; 20160622 (global_studentproject_submitter)</p>

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