EDUCATION OF "GOOD CARE": LESSONS LEARNED FROM THE DIGNITY IN CARE PROJECT.

This paper defends a pragmatist ethical approach in education. Such an approach has fuelled a pedagogical experimentation approach within the scope the "Dignity in care" (www.dignity-in-care.eu) European project, focusing on ethical practice in health and social care. Its key objective was to enhance 'good care', by reinforcing health care workers'ability to conduct an ethical reflection on the way they would deliver care. Nevertheless, 'good care'is a concept that may seem hard to define and to implement. To clarify and validate the characteristics and conditions of such a good care, and to explore the way to educate the concept of what "good care" is in a more concrete way, this paper presents a summary of findings across which we have come during the final conference of this three-year project and through a focus-group organized by the Lille Dignity-in-Care partners. The results show that a self-assessment work regarding pedagogical practices reveals necessary for an adaptation to the evolution of the socio-professional context. It is not just a matter of developing new pedagogical skills, but also of becoming able to understand the care context and situations. Future work on "what is good care" and the need for empowerment will have to leave from daily practices in order to suggest how to prepare/train caregivers to become responsive professionals. Both the matter of finding a way to enhance good care in existing care-settings, and the matter of finding and testing appropriate educational methods to help caregivers handle communication and deliver good care.

Outcomes of moral case deliberation--the development of an evaluation instrument for clinical ethics support (the Euro-MCD).

BACKGROUND: Clinical ethics support, in particular Moral Case Deliberation, aims to support health care providers to manage ethically difficult situations. However, there is a lack of evaluation instruments regarding outcomes of clinical ethics support in general and regarding Moral Case Deliberation (MCD) in particular. There also is a lack of clarity and consensuses regarding which MCD outcomes are beneficial. In addition, MCD outcomes might be context-sensitive. Against this background, there is a need for a standardised but flexible outcome evaluation instrument. The aim of this study was to develop a multi-contextual evaluation instrument measuring health care providers' experiences and perceived importance of outcomes of Moral Case Deliberation. METHODS: A multi-item instrument for assessing outcomes of Moral Case Deliberation (MCD) was constructed through an iterative process, founded on a literature review and modified through a multistep review by ethicists and health care providers. The instrument measures perceived importance of outcomes before and after MCD, as well as experienced outcomes during MCD and in daily work. A purposeful sample of 86 European participants contributed to a Delphi panel and content validity testing. The Delphi panel (n = 13), consisting of ethicists and ethics researchers, participated in three Delphi-rounds. Health care providers (n = 73) participated in the content validity testing through 'think-aloud' interviews and a method using Content Validity Index. RESULTS: The development process resulted in the European Moral Case Deliberation Outcomes Instrument (Euro-MCD), which consists of two sections, one to be completed before a participant's first MCD and the other after completing multiple MCDs. The instrument contains a few open-ended questions and 26 specific items with a corresponding rating/response scale representing various MCD outcomes. The items were categorised into the following six domains: Enhanced emotional support, Enhanced collaboration, Improved moral reflexivity, Improved moral attitude, Improvement on organizational level and Concrete results. CONCLUSIONS: A tentative instrument has been developed that seems to cover main outcomes of Moral Case Deliberation. The next step will be to test the Euro-MCD in a field study.

[Towards a reflexive governance of the ethical approach in healthcare institutions]. / Vers une gouvernance réflexive de la démarche éthique dans les institutions de soins.

We stand up in this article for bioethics as practice, as attest since the 1980 the evolution of theoretical work in bioethics towards a growing need of contextualization. This development justifies for us to work out a context sensitive, pragmatist and reflective ethics as a learning process. Such an idea of ethics allows to understand the transition from hospital ethics committes and clinical ethics consultation towards a more integrative institutional perspective that we defend here. This institutionalization of clinical ethics support services has to be accompanied by a reflective governance of this process. The papers of this issue aim to take into account in a various way this evolution of the bioethical field, both practical, methodological, institutional, educational and theoretical.

[How to institutionalize the ethical approach. The example of geriatric care]. / Quelle institutionalisation de la démarche éthique? L'exemple des soins gériatriques.

This paper aims at showing how strengthening and adapting the system of care to the needs and expectations of older people today requires a change in the way to conceive the ethical approach. If clinical ethics remains a fundamental tool of the ethical approach in order to identify and to understand the ethical issues of a geriatric practice both complex and uncertain, as well as to adequately articulate the patient's expectations, the technical quality of care and the organization of a complex support, this area of care manifests the need for an institutionalization of the ethical approach. To be relevant, legitimate and effective, the ethical approach must not only be opened to the organizational aspects of care but also be able to fit into the institutional dynamics.

[From using a model of decisional clinical ethics to constituting a place for collective learning. The experience of a reflexive seminar between healthcare professionals and ethics researchers]. / De l'usage d'une grille d'éthique clinique décisionnelle à la constitution d'un lieu d'apprentissage collectif. L'expérience d'un séminaire réflexif entre professionnels de santé et chercheurs en éthique.

This paper shows how an experimental clinical ethics device, proposed by researchers in ethics to intensive care units professionals, has created a collective learning context. The outcome of such a collective learning has been the progressive working-out, from the clinical and care practice, of a given clinical ethics grid into a more intensive care units context adapted grid. Some comments are made about the importance to subjectivize a clinical ethics approach, about the collective learning device installed throughout the joint health care professionals--researchers in ethics seminar and about the need to institutionalize ethics.

[Alzheimer's disease and related disorders: specificity of young onset patients, including ethical aspects]. / Maladie d'Alzheimer et syndromes apparentés : spécificités des « malades jeunes ¼, réflexions cliniques et éthiques.

The number of patients with young onset dementia (YOD) (that is before age 65) is estimated at 32,000 in France, and 5000 with onset dementia before 60 years. These patients differ from older ones by the greater number of rares causes (29%), heterogeneity of the presentation among the usual diseases, such as non-amnestic phenotypes of Alzheimer's disease, high frequency of frontal symptoms, and possible genetic origin. These aspects must be taken into account for the diagnosis, often more difficult than in older ones because patients have a little knowledge of the YOD, excepted in the genetics forms. YOD patients can still work or drive a car, and we should choose between the respect for autonomy and the security for the patient and their carers. YOD patients can be more often included in pharmacological trials because they have lower associated disorders. Individual non-pharmacological treatment should be priviledged because they don't easily accept collective activities with other patients over 60 years of age. Excepted for the very young patients (onset before 45), the survival is longer than in late onset dementia, with sometimes severe behavioral problems related to frontal syndrome. In France, the caregiving at home has been improved since the possibility for the YOD patients to receive a financial assistance reserved for the disabled patients, but admission to a nursing home before 60 is very difficult and increases the caregiver burden and perception of unfairness. There is a discrimination between young or older demented patients related to the great difficulty to meet the needs of younger patients, due to the rigidity of the medical and social systems. The presentation of a limited offer for the YOD patients must initiate reflections on our capacities to respect the autonomy and the dignity of the Alzheimer's patients regardless of age.

Institutional challenges for clinical ethics committees.

Clinical ethics committees (CECs) have been developing in many countries since the 1980s, more recently in the transitional countries in Eastern Europe. With their increasing profile they are now faced with a range of questions and challenges regarding their position within the health care organizations in which they are situated: Should CECs be independent bodies with a critical role towards institutional management, or should they be an integral part of the hospital organization? In this paper, we discuss the organizational context in which CECs function in Europe focusing on five aspects. We conclude that in Europe clinical ethics committees need to maintain a critical independence while generating acceptance of the CEC and its potential benefit to both individuals and the organization. CECs, perhaps particularly in transitional countries, must counter the charge of "alibi ethics". CECs must define their contribution to in-house quality management in their respective health care organization, clarifying how ethical reflection on various levels serves the hospital and patient care in general. This last challenge is made more difficult by lack of consensus about appropriate quality outcomes for CECs internationally. These are daunting challenges, but the fact that CECs continue to develop suggests that we should make the effort to overcome them. We believe there is a need for further research that specifically addresses some of the institutional challenges facing CECs.

Bioinformatics: The philosophical and ethical issues at stake in a new modality of research practices.

This article deals with the integration of ethical reflection into the research practices of the project at the Lille Nord-Pas-de-Calais genopole: "Multifactorial genetic pathologies and therapeutic innovations". The general hypothesis of this text is that changes in research practices in biology (mainly through the use of bioinformatics) imply changes in medical practices, which require critical reflection. This hypothesis could be broken down into three sub-hypotheses: (1) Research in biology is undergoing a complete transformation; (2) Research in biology is a cultural practice, which cannot be reduced to a simple cognitive action; (3) Research in biology is a techno-scientific practice. As for the method, the aim of our research at the Medical Ethics Centre is to elucidate the philosophical and ethical range of biomedical practices. This work entails a double task for reflection. On the one hand, from the revelation of ethical tensions present in these practices, we have to think about what is at stake in these practices, and more broadly in society. On the other hand, we have to analyse the conditions enabling the actors to assume the significance of ethical reflection in their practices. The method set up to undertake this double task could be qualified as "narrative hermeneutics", as its aim is to attempt to interpret the stakes in practices from proximity with these practices and from what their actors have to say about them. The text then goes on to analyse more specifically the emergence and place of bioinformatics in present-day biomedical research.

El envejecimiento: oportunidad para una medicina en busca de sus finalidades / The aging: opportunity for a medicine in search of its purposes

El envejecimiento y la atención geriátrica constituyen los dos aspectos (colectivo e individual) de una misma realidad cultural y social que deberían incitar a la medicina a una saludable transformación de su práctica,que la volviera más consciente de sus propios límites y finalidades. Que la volviera también más apta para convencer a la sociedad de admitir el envejecimiento; una sociedad dispuesta, con mucha facilidad, a desprendersey a encargar a la medicina de tareas sociales y políticas que no son de competencia médica. Esta es la idea central sostenida por este texto.