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034 Palliative care and end of life: for shared reflections and decision-making at all levels
  1. Julien Carretier1,2,
  2. François Blot3,
  3. Anne De Jesus3,
  4. Giovanna Marsico1,
  5. Sandrine De Montgolfier4,5,6,
  6. Francesca Mininel4,5,6,
  7. Isabelle Marcoux7,8,
  8. Nora Moumjid2,9,10
  1. 1National Center for Palliative and End-of-Life Care, Paris, France
  2. 2Pathways, Health, Systemic, P2S UR 4129, Lyon, France
  3. 3Gustave Roussy Institute, Cancer Campus Grand Paris, Villejuif, France
  4. 4Aix Marseille University, Marseille, France
  5. 5Inserm, IRD, Sesstim, Isspam, Marseille, France
  6. 6Paoli Calmette Cancer Center, Marseille, France
  7. 7Interdisciplinary faculty of Health Sciences, Ottawa, Canada
  8. 8Ottawa University, Ottawa, Canada
  9. 9Lyon 1 University, Lyon, France
  10. 10Léon Bérard Cancer Centre, Lyon, France

Abstract

More than any other area, end of life needs shared reflection and decision-making, at both individual (shared decision-making, SDM) and collective (deliberative democracy, social approach to death taboo) levels. In oncology, in particular, continuing treatments must be put into perspective with end of life quality.In this context, this symposium aims to discuss two experiences and two projects in France and Canada:At Gustave Roussy Institute, two focus groups of the patients-informal caregivers Committee identified SDM as a key issue in terminal cancer situations, just as much or even more so than at the beginning of the disease. Several areas emerged: chemotherapy completion; return to home or home care; clinical trial proposition. Equipoise and ’non-choice’ questions were raised.At a national level, the involvement of the National Center for Palliative and End of Life Care in the citizens’ convention on the end of life helped French citizens to adopt a common language and develop a relationship of trust, enabling them to make informed decisions that respect values and preferences of all concerned. This major participatory mechanism encouraged citizens to get involved, to co- construct common proposals and to respect dissensus, by putting them back at the heart of public debate.The model of compassionate communities developed in Quebec highlights the importance of partnership with citizens to promote and ensure the best possible health until the end of life, and to socially address death taboo. A project to implement compassionate communities in France will be presented.Finally, a participatory workshop aimed at questioning through a qualitative survey among oncologists and patients, the prescription of specific treatments with unproven efficacy in advanced phases of cancer, during and after COVID crisis, will be presented. The goal would be to co-construct a decision aid to promote SDM in these complex situations.

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