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Gustave Roussy Ethics Committee
As a body dedicated to reflection and action, the Gustave Roussy Ethics Committee works to benefit patients and healthcare professionals. It is composed of more than 20 members, including professionals from the institution and representatives of patients and caregivers.
The steering committee (“executive board”) consists of 8 medical and non-medical members; the executive board determines the committee’s strategic direction and helps promote the ethical approach through its participation in the Institutional Strategic Project.
Key Figures
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+20
members of the Ethics Committee
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20
ethics complaints reviewed each year
The Ethics Committee
The committee’s role is to foster discussion around the concept of ethics in healthcare. Each year, an Ethics Forum addresses a specific theme with guest speakers, attended by staff. Through these outreach efforts, its day-to-day activities, and support for healthcare professionals, the Ethics Committee helps foster a culture of foresight and reflection in healthcare.
For example, the Ethics Committee has collaborated with the Mobile Palliative Care and Support Team (EMASP) to the development of a decision-making aid form for the scaling of care in the event of a deterioration (FAD), which guides the care pathway for patients hospitalized at Gustave Roussy. This form is completed upon admission, transfer, or a change in clinical status, preferably as a team; since 2020, the FAD has been available in the header of the electronic medical record. In 2024, a pediatric form was created. Much more than a tool, the FAD’s primary purpose is to foster opportunities for discussion and proactive planning. (Presentation at the 2021 MASCC Congress)
The committee assists in reviewing complex situations through the implementation of weekly, multidisciplinary collegial support meetings (RCA) (Presentation at the 2021 MASCC Congress); the ethics committee also intervenes, outside of the CSMs, upon referral by any professional facing an ethical dilemma in patient care, or to provide feedback on complex situations (“Sessions for Ethical and Emotional Analysis and Reflection”).
In connection with these institutional activities, the Ethics Committee addresses more specific issues, such as therapeutic commitment and palliative care culture, information and the promotion of advance directives, and the “empowerment” of patients through the shared decision-making process. Ethical aspects related to nutrition in oncology are also given special attention.
Finally, the Ethics Committee collaborates (members, shared staff, etc.) with the League’s Ethics Committee, the Regional Ethics Forum, the Cochin Ethics Center, the PRET ethics group at the Val-de-Marne Saint-Maurice psychiatric hospitals, the Sentara Norfolk General Hospital Ethics Committee (Virginia, USA), and the Ethics Group at Foch Hospital.
Providing Support in Complex Situations
Healthcare professionals may refer a matter to the steering committee at any time regarding the care of a patient. Two to four members of the steering committee participate in urgent referrals (within hours or days, as appropriate) at the request of healthcare services to contribute to the ethical discussion of complex or exceptional cases. The Ethics Committee is not intended to find a solution or to mandate any decision whatsoever; it merely facilitates a collective dialogue, fosters reflection, and, strictly speaking, can only offer an advisory opinion.
Approximately 20 cases are referred each year, the main reasons for which relate to therapeutic intervention (discontinuation of specific treatments versus so-called unreasonable obstinacy; the role of advance directives in light of the risk of unreasonable obstinacy), situations involving refusal of care (for example, refusal of a blood transfusion), or decision-making autonomy in response to a request for consent.
Stemming from the “supportive multidisciplinary team meeting” proposal in the Vernant Report—a prelude to the Third Cancer Plan in 2014—collegial support meetings (RCA) are designed to facilitate multidisciplinary discussion of complex cases. They include the unit’s physicians and paramedical staff, sometimes the referring physician, as well as individuals from outside the department who are part of the DIOPP teams: a palliative care physician, a psychologist, an intensive care physician (also present as a member of the ethics committee), as well as, when appropriate, the Pain Management and Social Services teams.
The RCA meetings are held weekly in three departments of the Department of Medicine, within the Palliative Care Expertise Unit (UDEP) and in the intensive care unit; elsewhere, they are held bimonthly or monthly (ENT, pediatrics; pre-rehabilitation and post-rehabilitation; Endocrinology). Each year, the cases of more than 150 patients are discussed in RCA meetings.
Established in 2023, these sessions offer an “objective” analysis of complex or recurring situations and are conducted with Ms. S. Proust, an occupational psychologist. The entire team is invited to participate in this remote analysis and debriefing on complex situations. Any Gustave Roussy professional may submit a request.
Adherence to key ethical principles—in particular, patients’ autonomy in decision-making—requires recognition of a dual form of knowledge: on the one hand, the academic and scientific knowledge of healthcare professionals, and on the other hand, the experiential knowledge that complements the values and preferences of patients, particularly those affected by chronic or long-term illnesses (as is frequently the case in oncology).
The decision-making process must take these two forms of expertise into account and incorporate this set of values and preferences. The shared decision-making process thus represents a path of excellence between the paternalistic approach on the one hand and the “patient as decision-maker” model on the other. Decision-aid tools support this shared decision-making process. This shared decision-making process applies to all fields of medicine, particularly in oncology, but also in palliative care and in the management of many other conditions.
The Ethics Committee has long been involved in reflection and education on shared decision-making, notably through its participation in the creation of the French-speaking FREeDOM Group and in various conferences.
Gustave Roussy, in collaboration with the ethics committee and the legal department, is offering a one-day training session covering theoretical and medical concepts (such as error, negligence, and harm) as well as legal issues, structured around role-playing exercises based on real-life cases. The goal is to foster a better collective understanding of the complex phenomenon of healthcare-associated harm, to analyze it objectively while attempting to manage emotions and reduce feelings of guilt, and finally, to maintain or restore the care relationship between patients and their loved ones on one hand, and the healthcare team on the other. This training program, established in 2013, is open to all healthcare professionals.
Palliative Care and End-of-Life Care
In addition to the local initiatives described above, the ethics committee participates in cross-center discussions on palliative care in oncology, particularly regarding the emergence of the concept of the “oncology-palliative care ecotone.”
The psycho-oncology team at our CLCC assessed healthcare professionals’ knowledge of palliative care practices and the 2016 Claeys-Leonetti Law.
More broadly, the Ethics Committee is involved in societal discussions on end-of-life care, on the issues surrounding active assistance in dying in France (focus groups brought together 85 professionals in parallel with the Citizens’ Convention), as well as issues of vulnerability and autonomy.
The Ethics Committee’s annual conference on June 17, 2024, was dedicated to the proposed legislation on end-of-life care and assisted dying, attended by Messrs. Alain Claeys, Michèle Lévy-Soussan, Elise Chartier, Christine Raynaud-Donzel, and Gérard Reach.
Finally, the Ethics Committee is engaged in discussions on therapeutic commitment and end-of-life care in intensive care, both through weekly RCA meetings in the intensive care unit and through contributions to specific publications.