A partir de l’hémodialyse, nous étudierons certains problèmes plus généralement liés à la maladie chronique mais aussi la fin de vie pour mettre en tension trois dualités : l’exactitude et la vérité, les morales déontologiques et téléologiques, et la logique d’équivalence et de surabondance. Dans la maladie chronique, nous nous intéresserons aux cas où il existe une contradiction entre le devoir thérapeutique du médecin et la volonté de la personne malade. Nous montrerons que ces refus de soin en dialyse sont sous-tendus par une tension entre l’exactitude technique des traitements proposés et la vérité éthique et existentielle de la personne. Dans la fin de vie, nous nous poserons la question de savoir quand commence l’obstination déraisonnable, comment définir sa limite, et comment limiter ou arrêter la dialyse tout en étant certain de ne pas réaliser un homicide ? Nous montrerons également que les normes, les indicateurs et les protocoles prolifèrent pour participer à une standardisation des pratiques de plus en plus hégémonique, où plusieurs moteurs sont à l’œuvre, comme la rationalité néolibérale et la gestion du risque.  Ceci aboutit à un désenchantement des soignants. Un constat apparait : l’exactitude, la technique, les morales déontologiques rabattues sous forme de protocoles et la logique d’équivalence deviennent envahissantes. A l’inverse la vérité du sujet, l’éthique, la responsabilité de l'autre vulnérable, le don d’hospitalité tendent à être précarisés. La riposte à cette dérive pourrait être la réhabilitation de la singularité du sujet et la création de métaphore vive entre exactitude technique et la vérité éthique. Enfin, nous montrerons comment lorsqu’il existe un dilemme lié à une tension entre technique et éthique, la mise en place d’une réunion d’éthique nous a permis d’apporter la réponse la plus humaine possible et de favoriser le développement d’une culture d’équipe. / From hemodialysis, we will study certain problems more generally related to chronic disease but also to the end of life bring out the tension between three dualities: the accuracy and the truth, déontological and teleological ethics, and the logics of equivalence and superabundance. In chronic illness, we will be interested in cases where there is a contradiction between the medical duty of the physician and the will of the sick person. We will show that these refusals of care in dialysis are underpinned by a tension between the technical accuracy of the proposed treatments and the ethical and existential truth of the person. In the end of life, we will ask ourselves the question of when unreasonable obstinacy begins, how to define its limit, and how to limit or stop dialysis while being sure not to perform a homicide? We will also show that norms, standards, indicators and protocols proliferate to participate in a standardization of increasingly hegemonic practices, where several drivers are at work, such as neoliberal rationality and risk management. This leads to a disenchantment of caregivers. One observation emerges: the accuracy, the technique, the déontological ethics folded in the form of protocols and the logic of equivalence become invasive. Conversely, the truth of the subject, ethics, the responsibility of the other vulnerable, the gift of hospitality tend to be precarious. The response to this drift could be the rehabilitation of the singularity of the subject and the creation of a metaphor between technical accuracy and ethical truth. Finally, we will show how, when there is a dilemma linked to a tension between technique and ethics, the setting up of an ethics meeting allowed us to provide the most humane answer possible and to foster the development of a team culture.

The making of an end of life decision represents worldwide one of the most difficult issues that physicians can be confronted with - not only should it be regarded as consisting of medical and legal aspects, but ethics and moral values are present as well. Furthermore, it shall not be supposed that the economic parameter is negligible, unfortunately even to the contrary. The fact that the decision is often made by physicians under pressure caused by a system of limited resources (and therefore it can not avoid being distorted ) must be kept in mind. At any rate , according to Czech law under which neither assisted suicide nor life termination on the request is allowed, the legality and legitimacy of withdrawal and withholding of medical treatment is based on the argument of informed consent of the patient, advanced directives and the standard of lege artis treatment. These also shall be pleaded as defences in eventual criminal proceedings.

The purpose of this study was to investigate the process used by Haitians and Haitian Americans who must make healthcare decisions for a terminally ill family member. There is a large population of Haitians and Haitian Americans in South Florida and there has been no research regarding their decision-making process about end-of-life healthcare. The study design was descriptive, applying constructivist grounded theory methodology. Data were collected using semi-structured, face-to-face qualitative interviews. Data analysis and collection occurred simultaneously. Participants (n=12) were purposefully recruited, with 11 from a single, faith-based community. The findings resulted in six concepts: (1) imminent or actual death, (2) disrupted unity, (3) managing disrupted unity, (4) consequences, (5) restoring unity, and (6) creating memories you can live with. These six concepts, elaborated by an additional 17 dimensions, were incorporated into a process model relating to the cultural value of communal unity to the end-of-life decision-making process. The implications of this study include a need to improve the congruence between the nursing care provided at this vulnerable time and the cultural values of this population. Successful access to this population through the structure of the faith-based community points the way to increasing access to appropriate end-of-life healthcare. Practice implications informed by caring science include the importance of nurses’ coming to know the family and listening to the unique care needs. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2015. / FAU Electronic Theses and Dissertations Collection