Preparing for the End of Life in Patients with Advanced Cancer: Development and Evaluation of a Dedicated Consultation Service

Among patients with advanced cancer, discussions about care goals and preferences often occur too late (Wright et al., 2008), despite the observed benefits of early palliative care (Temel et al., 2010). Some care pathways include chemotherapy close to the time of death and intensive care (Earle et al., 2004), without any consistent benefit from chemotherapy on quality of life at the end of life (Prigerson et al., 2015). An incomplete understanding of treatment goals and prognosis has also been documented (Weeks et al., 2012; Christakis & Lamont, 2000). However, engaging in advance care planning does not appear to undermine patients’ hope (Cohen et al., 2022).

Advance Care Planning (ACP) is a process that allows individuals to express their values, goals, and preferences regarding future care with their loved ones and healthcare professionals (Sudore et al., 2017; Rietjens et al., 2017). Structured interventions notably improve discussions and their documentation (Paladino et al., 2019), but evidence of their effects on clinical outcomes remains limited and heterogeneous (Jimenez et al., 2018). Their implementation faces individual, professional, and organizational barriers (Guccione et al., 2023) and requires adaptation to the specific context. In France, legislative changes regarding end-of-life care and assisted dying underscore the importance of context-specific approaches.

The originality of this project lies in the context-specific development of an ACP intervention for advanced cancer, integrating scientific data with the clinical and organizational context, in order to define an intervention that can be piloted and ultimately evaluated for its impact on decision-making processes and care pathways.

Objective. To develop and co-design, at the Paoli-Calmettes Institute (IPC), an ACP consultation for patients with advanced cancer, and then to study its feasibility, acceptability, and conditions for implementation.

Methodology. This interventional research will adopt a participatory, iterative, and mixed-methods approach, guided by the Medical Research Council’s framework for complex interventions (Skivington et al., 2021). Two phases are planned.

Phase I, which is qualitative, will consist of four components: (1) a targeted realistic review to identify how, for whom, and in what contexts ACP interventions work, and to develop an initial theory (Wong et al., 2013); (2) a contextual analysis of the IPC, combining a literature review and semi-structured interviews with key professionals; (3) focus groups exploring stakeholders’ experiences, perceptions, and needs, as well as hypotheses regarding how the intervention works; (4) three participatory workshops to prioritize components, define delivery and integration methods, and then formalize the consultation.

Phase II will consist of a mixed-methods interventional pilot study involving patients with advanced cancer being treated at the IPC. It will combine feasibility indicators, standardized questionnaires, non-participant observations, and interviews with healthcare professionals. Triangulation of quantitative and qualitative data will enable an examination of acceptability, implementation conditions, and the proposed mechanisms. Randomization may be considered depending on available resources and ethical and regulatory approvals.

Expected results. The project will produce a contextualized, co-developed, and formalized ACP consultation, accompanied by a theory of how it works. The pilot study will document its feasibility and acceptability, the barriers and enablers to its clinical integration, and the necessary adaptations.