ABSTRACT
The study aimed to elicit the perception and ethical considerations of patients and proxies with respect both to the individual medical decisions and public health decisions made during the COVID-19 crisis. It used a qualitative, multi-center study based on semi-directive interviews, conducted by an interdisciplinary team. The analysis was conducted using a thematic analysis approach and an ethical framework. Three themes emerged from the analysis: 1) patients, unlike proxies, did not complain about their diminished role in the decision-making process. Both highlighted the importance of "basic care" as opposed to a technical approach to treatment; 2) despite the transparency of the information process, a deep "crisis of trust" has developed between citizens and public authorities; 3) although both patients and proxies accepted the limitations of personal liberties imposed in the name of public health, they argued that these limitations should respect certain boundaries, both temporal and spacial. Above all, they should not affect basic affective human relationships, even if such boundaries are a factor in an increased risk of infection. The study showed that there is a need to reconsider the definition and the main principles of public health ethics, namely transparency and proportionality.
L'étude vise à analyser la perception que les patients et les proches de patients pris en charge pendant la crise de la COVID-19, ont pu avoir de leur prise en charge, et leurs réflexions éthiques sur la place et la définition de la santé publique. L'étude a utilisé une méthode qualitative et multicentrique. Les entretiens semi-directifs ont été conduits par une équipe pluridisciplinaire et analysés avec une approche thématique et une grille de lecture éthique à partir des principes de l'éthique biomédicale. Trois thèmes ont émergé : 1) Les patients ont exprimé peu de revendications de participer aux décisions médicales les concernant, contrairement aux proches qui se sont sentis exclus de leur rôle. Tous ont mis l'accent sur l'importance des soins de base par rapport aux soins techniques ; 2) La gestion de la crise n'est pas jugée sévèrement, mais une crise de confiance importante a été mise en évidence, malgré la « transparence ¼ affichée de l'information ; 3) les contraintes collectives ont été largement acceptées au nom de la solidarité, mais on a jugé qu'elles doivent avoir des limites (temporelle et spatiales). Surtout, elles ne doivent pas empêcher des relations humaines simples et essentielles. L'étude met en évidence qu'il est nécessaire de développer une réflexion nouvelle autour de l'éthique de la santé publique : il convient de questionner les principes de « transparence ¼ et de « proportionnalité ¼ et d'adopter une définition de « santé publique ¼ plus large que la minimisation du risque infectieux.
Subject(s)
COVID-19 , Public Health , HumansABSTRACT
Title: Peut-on enlever un pacemaker au nom de l'obstination déraisonnable ? - L'histoire d'Odette. Abstract: « Les humanités en santé : histoire de cas ¼ sont coor- données par Claire Crignon, professeure d'histoire et de philosophie des sciences à l'université de Lorraine, qui a créé le master « humanités biomédicales ¼ à Sorbonne université.
Subject(s)
Medical Futility , Pacemaker, Artificial , HumansABSTRACT
While in Europe the debate over clinical ethics consultants' expertise and professionalization is ongoing, in France it remains rather marginal. In this article, we illustrate how the "commitment model" adopted by the Clinical Ethics Center of the Greater Paris University Hospitals situates itself in such a debate. We first present the commitment model by drawing upon an emblematic case of consultation, and then describe, in turn, its understandings of democratic expertise and of the professionalization of clinical ethics consultation. Accordingly, the commitment model advocates against individual consultants' certification, but it does not rule out the need for training nor a certain form of professionalization of clinical ethics consultation services.
Subject(s)
Ethics Consultation , Certification , Consultants , Ethicists , Ethics, Clinical , HumansABSTRACT
During the first outbreak of COVID-19, the French governmental advisory council on bioethics suggested the need to support healthcare providers with ad hoc "ethical support units." Several units engaged in such endeavors across the country. This article outlines some methodological considerations made by the Cochin Hospital Clinical Ethics Center (the Cec). The Cec was founded in 2002 to provide clinical ethics support services. While its approach was inspired by North American models, it was shaped by and adapted to the French context. This approach is called the "Commitment Model," as it draws upon societal engagement in all phases of its service and places the perspectives of individual patients at its core. During the first outbreak of COVID-19 pandemic, the Cec received a greater number of requests about recurring care practices or ethical guidelines and recommendations than single clinical ethics dilemmas. Through the presentation of an illustrative consultation, this article describes how, while the Cec made some adjustments to its service for the emergency situation, it preserved its case-by-case approach rather than engaging in what it calls organizational and institutional ethics. Such an approach allowed the Cec to refocus attention to individual patients and their unique circumstances and to support decision makers by the use of case-by-case, problematized, ethical reflections.
Subject(s)
COVID-19 , Ethics Consultation , Communicable Disease Control , Ethics, Clinical , France , Humans , Pandemics , SARS-CoV-2ABSTRACT
Heart failure is a serious and common disease in the elderly. It causes repeated hospitalizations with a progressive overall decline. It is often difficult at an advanced stage of the disease to "choose" between quality and quantity of life for both patients and their families and caregivers. A reflection conducted at the Centre for Clinical Ethics of the Assistance publique-Hôpitaux de Paris can help to make progress on these difficult choices.
Subject(s)
Caregivers/psychology , Heart Failure/therapy , Aged , Choice Behavior , Humans , Quality of LifeABSTRACT
Several approaches to clinical ethics consultation (CEC) exist in medical practice and are widely discussed in the clinical ethics literature; different models of CECs are classified according to their methods, goals, and consultant's attitude. Although the "facilitation" model has been endorsed by the American Society for Bioethics and Humanities (ASBH) and is described in an influential manual, alternative approaches, such as advocacy, moral expertise, mediation, and engagement are practiced and defended in the clinical ethics field. Our Clinical Ethics Center in Paris was founded in 2002 in the wake of the Patients' Rights Act, and to date it is the largest center that provides consultation services in France. In this article we shall describe and defend our own approach to clinical ethics consultation, which we call the "Commitment Model," in comparison with other existing models. Indeed commitment implies, among other meanings, continuity through time, a series of coherent actions, and the realization of important social goals. By drawing on a recent consultation case, we shall describe the main steps of our consultation procedure: interviews with major stakeholders, including patients and proxies; case conferences; and follow up. We shall show why we have chosen the term "commitment" to represent our approach at three different but interrelated levels: commitment towards patients, within the case conference group, and towards society as a whole.
Subject(s)
Clinical Decision-Making/methods , Decision Making , Ethics Consultation/ethics , Moral Obligations , Negotiating , Parents , Patient-Centered Care/ethics , Prader-Willi Syndrome , Social Responsibility , Social Values , Withholding Treatment/ethics , Adult , Decision Making/ethics , Disabled Children , Enteral Nutrition , Ethicists , Ethics, Clinical , Euthanasia, Passive/ethics , Female , France , Humans , Infant, Newborn , Male , Negotiating/methods , Negotiating/psychology , Parents/psychology , Prader-Willi Syndrome/diagnosis , Prader-Willi Syndrome/therapyABSTRACT
This paper will present and discuss our conclusions about the ethics of living donation for liver transplant (LDLT) after 8 year of collaboration between our clinical ethics consultation service and liver transplant teams, in the course of which we met with all donor-candidates. We will focus on the results of a follow-up study that was conducted in order to evaluate the long-term consequences for potential donors and to interview them on the ethical aspects of the screening process. This study was conducted from April 2007 to November 2009 and consisted of interviews with donor-candidates, regardless of whether they underwent harvest surgery, at least 1 year after the recipient's transplant. We explored their views about their own and the recipients' physical and psychological condition, changes in family and career dynamics, their experience as potential or real donors, and their views about LDLT process in general. Results shed new light on the ethical grounds of LDLT and allow us to envisage new ways of improving the ethical soundness of current procedures and practices. In particular, we argue that the purpose of an ethics committee should be to provide follow-up support for the donors rather than merely to check the freedom of donors' consent. We also suggest that the recipient's consent deserves more attention than it currently receives.
