Partnering with patients in translational oncology research: ethical approach.

BACKGROUND: The research program CARPEM (cancer research and personalized medicine) brings together the expertise of researchers and hospital-based oncologists to develop translational research in the context of personalized or "precision" medicine for cancer. There is recognition that patient involvement can help to take into account their needs and priorities in the development of this emerging practice but there is currently no consensus about how this can be achieved. In this study, we developed an empirical ethical research action aiming to improve patient representatives' involvement in the development of the translational research program together with health professionals. The aim is to promote common understanding and sharing of knowledge between all parties and to establish a long-term partnership integrating patient's expectations. METHODS: Two distinct committees were settled in CARPEM: an "Expert Committee", gathering healthcare and research professionals, and a "Patient Committee", gathering patients and patient representatives. A multidisciplinary team trained in medical ethics research ensured communication between the two committees as well as analysis of discussions, minutes and outputs from all stakeholders. RESULTS: The results highlight the efficiency of the transfer of knowledge between interested parties. Patient representatives and professionals were able to identify new ethical challenges and co-elaborate new procedures to gather information and consent forms for adapting to practices and recommendations developed during the process. Moreover, included patient representatives became full partners and participated in the transfer of knowledge to the public via conferences and publications. CONCLUSIONS: Empirical ethical research based on a patient-centered approach could help in establishing a fair model for coordination and support actions during cancer research, striking a balance between the regulatory framework, researcher needs and patient expectations. Our approach addresses the concept of translational ethics as a way to handle the main remaining gap between combining care and research activities in the medical pathway and the existing framework.

[Palliative care: social and territorial inequalities]. / Soins palliatifs : inégalités sociales et territoriales.

PALLIATIVE CARE: SOCIAL AND TERRITORIAL. INEQUALITIES.Palliative care can be provided wherever the patient lives or receives care, considering its environment, in coordination with healthcare professionals, social and medico-social professionals. The way in which palliative care is provided varies from one country to another, depending on resources, cultural values, healthcare systems and policies of each country. There are disparities in access, particularly in rural areas and for vulnerable populations. One of the main limitations to the development of palliative care, after budgetary issues, is the insufficient development of a professional workforce specializing in palliative care. The overseas territories are in a specific situation, with populations suffering from a combination of social and territorial health inequalities. This approach to frailty makes it possible to anticipate and plan for palliative care to meet the future patients' needs. French citizens living in extreme poverty, protected persons, people with psychiatric disorders, elderly, people with disabilities and anyone else with one or more vulnerabilities face situations where they cannot exercise all their rights. The national ten-year strategy on « palliative care, pain management and support at the end of life ¼ places priorities to reducing all forms of inequalities in end-of-life journeys.

SOINS PALLIATIFS: INÉGALITÉS SOCIALES ET TERRITORIALES. La prise en charge palliative est susceptible d'intervenir quel que soit le lieu de vie ou de soins et elle s'organise dans l'environnement de la personne malade, avec l'appui de professionnels de santé et du secteur social ou médico-social et des équipes de soins. Les modalités de prise en charge palliative varient d'un pays à l'autre en fonction des ressources, des valeurs culturelles, des systèmes de santé et des politiques internes. Il existe des disparités d'accès, en particulier dans les zones rurales et pour certaines populations en situation de fragilité. Une des principales limites au développement des soins palliatifs et à l'accompagnement en fin de vie, outre les problématiques de financement et de tarification, est le développement insuffisant de la démographie professionnelle spécialisée en soins palliatifs. Les territoires d'outre-mer relèvent de situations spécifiques, avec des populations qui cumulent des inégalités sociales et territoriales de santé. L'approche de la fragilité permet d'anticiper et d'envisager une prise en charge palliative afin de répondre aux futurs besoins des personnes malades et de leurs proches aidants. Les citoyens français en situation de grande pauvreté, les personnes protégées, celles atteintes de troubles psychiatriques, les personnes âgées, en situation de handicap et toutes celles ayant une ou plusieurs fragilités se heurtent à des situations où elles ne peuvent exercer la totalité de leurs droits. Les mesures et actions de la stratégie décennale « soins palliatifs, prise en charge de la douleur et accompagnement de la fin de vie ¼ s'inscrivent dans la réduction et la lutte contre toutes formes d'inégalité dans les parcours de fin de vie des personnes malades et de leurs proches.

[State of palliative care in France]. / État des lieux des soins palliatifs en France.

STATE OF PALLIATIVE CARE IN France. France is facing an epidemiological context marked by an increase in the number of elderly and very elderly people (often polypathological and dependent), and in the number of people suffering from serious or degenerative chronic illnesses. Considering people's needs and providing them with support in their last period of life has become more time-consuming, requiring appropriate care. The end-of-life trajectories of French people are heterogeneous, with a diversity of palliative and end-of-life trajectories coexisting, depending on their pathologies, personal situations, and frailties. This observation, combined with a legislative framework that has been evolving since the 90s to strengthen the rights of patients and their families, has prompted public authorities to reform end-of-life care provision, so that it is effective wherever the end of life takes place, and in line with societal expectations. A palliative care network is currently being set up at regional level and will be gradually extended to each region. Based on currently available data, the Centre National des Soins Palliatifs et de la Fin de Vie (National Center for Palliative and End-of-Life Care) has published an atlas to provide a better understanding of the evolution of end-of-life care provision and activity in France, the key figures of which are summarized in this article. This situation remains incomplete due to the lack of identification of trained professionals and the care procedures performed, especially at home. The government's current ambition to strengthen dedicated territorial organizations based on personalized care and support plans is a response to the present and future challenges of organizing palliative and end-oflife care in France.

ÉTAT DES LIEUX DES SOINS PALLIATIFS EN France. La France fait face à un contexte épidémiologique marqué par une augmentation du nombre de personnes âgées, voire très âgées (souvent polypathologiques et dépendantes), et de celui de personnes atteintes d'une maladie chronique grave ou dégénérative. La prise en compte des besoins des personnes et leur accompagnement pendant leur dernière période de vie devenue plus longue nécessite une prise en charge adaptée. Les parcours de fin de vie des Français sont hétérogènes, faisant coexister une diversité de trajectoires palliatives et de fin de vie en fonction de leurs pathologies, leur situation personnelle et leurs fragilités. Ce constat ainsi qu'un cadre législatif évoluant depuis les années 1990 vers un renforcement des droits des personnes malades et de leurs proches engagent les pouvoirs publics en direction d'une réforme de l'offre en soins de la fin de vie afin qu'elle soit effective quel que soit le lieu et en adéquation avec les attentes sociétales. Une filière de soins palliatifs est en cours de structuration au niveau régional et est amenée à se décliner de manière graduée à l'échelle de chaque territoire. Sur la base des données actuellement disponibles, le Centre national des soins palliatifs et de la fin de vie publie un atlas pour mieux comprendre l'évolution de l'offre et de l'activité en matière d'accompagnement de la fin de vie en France, dont une synthèse des chiffres clés est proposée dans cet article. Cet état des lieux reste incomplet par manque d'identification des professionnels formés ainsi que des actes de soins réalisés, et ceci est d'autant plus vrai au domicile. L'ambition gouvernementale actuelle d'aller notamment vers un renforcement des organisations territoriales dédiées qui s'appuient sur des plans personnalisés de soins d'accompagnement constitue une réponse aux défis d'aujourd'hui et de demain pour l'organisation des soins palliatifs et de la fin de vie en France.

Implementation of shared decision-making and patient-centered care in France: Towards a wider uptake in 2022.

We present the evolution of patient-centered care (PCC) and shared decision-making (SDM) in France since 2017, highlighting advantages and drawbacks of their implementation at the macro level. We then focus on several key policy and legislative milestones that are aimed to develop PCC and SDM. These milestones underline the importance of patient movements to support and fund the development of research and practice in the field. We shall conclude by presenting the growing research agenda and selected key topics. These key topics notably include the increase in both patient and healthcare professional trainings on PCC and SDM provided by healthcare users' and patients' representatives. PCC and SDM continue to be central preoccupations at the macro level, supported by public health policies and patients/healthcare users' actions. This overview, however, suggests that although implementation initiatives have increased since 2017, implementation remains scarce in routine clinical practice. Funding, not only for research projects, but for the implementation of PCC and SDM in real-life settings (e-decision aids, clinical guidelines integrating PCC/SDM, human resources dedicated to PCC/SDM, etc.) are needed to promote sustained adoption. More systematic training for both healthcare professionals and patients is also warranted for a true acculturation to occur.

[Artificial intelligence: a benefit for patients?] / Intelligence artificielle : un atout pour les patients ?

While artificial intelligence (AI) may have raised concerns, these questions are now making way for in-depth discussions on how to take advantage of its potential to ensure advances for patients. From this point of view, AI can constitute a real lever for strengthening the doctor-patient relationship, subject to a certain number of conditions.

[What place for an Ethics committee in a comprehensive cancer centre? For an ethics embodied in real life]. / Quelle place pour un comité d'éthique dans un Centre de lutte contre le cancer ? Pour une éthique incarnée.

The Ethics committee of Gustave Roussy cancer center is devoted to both reflection and action. The group has 40 members, professionals, patients and outside experts. These meet in plenary meetings or in specific working sessions and intervene at the request of any professional faced with ethical questions in the care. This Ethics Committee has voluntarily a double vocation: on one hand, a reflective group on major issues of ethics in health and its involvement in hospital life; on the other hand, a working group embedded in the daily lives of the care. The themes addressed at the meetings (plenary sessions, annual meetings) include shared-decision making, advance directives, refusal of care, religious aspects, or biomedical research… Daily activity centered on the care revolves around several times a week meetings, in various services, "Supportive Collegial Meetings" such as proposed in the 3rd French Cancer Plan; these include nursing staff members, oncologists, intensive and palliative care specialists, psychologist, around difficult medical and/or ethical situations. In case of situation requiring an urgent discussion, a referral to the Ethics Committee brings together within 24hours four to five members of the Committee and the care team. Moreover, the Ethics Committee helped develop Aid to Decision making Form upon care gradation for hospitalized cancer patients. Through these interventions on a daily basis, assistance of professionals, reflexive vocation or even delivery of training, the Ethics Committee contributes to an acculturation around anticipation and collegiality in the care. Its double polarity aims to reconcile "philosophical time' for the ethics process, and the connection with the routine issues raised by patients, their families and caregivers.

Moving towards shared decision making in the physician-patient encounter in France: State of the art and future prospects.

In this paper we present the evolution of shared decision making since the mid-nineties in terms of legislation, official statements and guidelines. We outline the goals and declarations of the French Ministry of Health and the French National Authority for Health, for whom informing patients and shared decision-making are central concerns. Finally, we discuss research projects and clinical initiatives in shared decision-making in France and provide a general overview of progress and barriers to progress.