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Although survival rates for several cancer types have improved
across the EU, a substantial proportion of patients still face incurable
diagnoses. In France, cancer-related mortality remains high, with
164,095 deaths recorded in 2022 (Panorama des cancers en France 2025, édition spéciale 20 ans,
2025). While survival rates have improved for different types of
cancer, many patients still receive incurable diagnoses, making
palliative care not only important but essential. Since 1999, France has
consistently worked toward establishing a comprehensive palliative care
system, creating four national plans (Développement des soins palliatifs et accompagnement de la fin de vie plan national 2021–2024,
2021). Each plan has been continuously improved through lessons learned
and responses to changing healthcare needs. The 2015 expansion to
include “end-of-life support” acknowledged that palliative care extends
beyond terminal stages and often lasts for years as patients manage
advanced disease (Strang, 2022).
This policy evolution led to the creation of the Centre National des Soins Palliatifs et de la Fin de Vie (CNSPFV)
in 2016. Established by ministerial decree under the 2015–2018 National
Plan, the CNSPFV serves a unique mission: to increase understanding of
end-of-life issues, raise public awareness, and encourage societal and
ethical debate while promoting shared decision-making between patients
and healthcare professionals. Its primary goals are enhancing quality of
life, upholding dignity, and ensuring patient comfort which align
closely with the priorities of Europe’s Beating Cancer Plan (EBCP). This
prolonged care approach is particularly significant given that cancer
is the leading cause of death in France, as highlighted by the atlas of
palliative and end-of-life care in France managed by the CNSPFV (Cousin F
et al., 2023).
Since its founding, the CNSPFV has adopted a participatory governance model that unites patient associations, healthcare professionals, institutions and citizens. Functioning as a resource centre, an observatory, and a centre for dialogue and debate,
it is grounded in the principles of participatory democracy. In
practice, this means that all stakeholders – patients, families,
healthcare workers and institutions – have a voice in shaping palliative
care policies and practices through their active involvement in CNSPFV
working groups and projects focused on palliative care, end-of-life
support and bereavement. To ensure inclusivity, the CNSPFV created a
mirror group that includes users, caregivers and a representative of the
French Comprehensive Cancer Centre (the Unicancer Federation). This
group adapts information to diverse audiences and helps identify the
real needs of patients and caregivers based on their lived experiences.
An expert commission supports strategic planning and monitors
implementation to ensure effective governance and representation of all
stakeholders. Key collaborators include the National League Against
Cancer, the National Cancer Institute and the Unicancer Federation,
which contribute to projects specifically focused on palliative care in
oncology.
These collaborative efforts have produced several concrete initiatives to support their mission. They launched their website (parlons-fin-de-vie.fr)
as a central resource. The organization created educational leaflets
called “les essentiels de la fin de vie” to inform the public about
end-of-life care. They actively participated in symposiums organized by
L’Institut National du Cancer (INCa) and other organizations to share
knowledge and best practices. Additionally, they developed a MOOC
(Massive Open Online Course) designed to educate both the general
population and healthcare professionals about their rights regarding
palliative care.
Enablers: A key enabler of the CNSPFV’s success is its strong political and institutional support, the establishment through a ministerial founding decree, and a commitment to transparency via its dedicated platform (Governance).
The active inclusion of civil society organizations such as the League
Against Cancer, Renaloo, Young Caregivers Together, the National Union
of Family Associations, the Federation of Aphasics and Little Brothers
of the Poor has further strengthened the centre’s legitimacy, ensuring
that diverse perspectives are integrated into decision-making processes.
Another critical enabler is the stability of financial resources,
guaranteed through continuous support from the French Ministry of Health, fostering continuity and sustainability (Funding).
The CNSPFV further benefits from the mobilization of a wide range of
contributors, including healthcare experts, caregivers and trained user
representatives, ensuring that its actions are grounded in both
professional and lived experience (Resources). The development
and dissemination of co-created educational content via the
parlons-fin-de-vie.fr platform exemplify the centre’s commitment to
inclusive, accessible, and evidence-informed communication, making
palliative care information more available and understandable to varied
audiences (Service delivery).
Barriers:
A key barrier within the governance structure is the complexity of
inter-institutional coordination. A major obstacle within the governance
structure is related to the challenges of involving multiple
stakeholders whose approach to end-of-life care can vary depending on
their missions and membership structures (professional organizations,
association representatives, institutional actors, etc.) (Governance).
Despite stable national-level funding, a notable limitation is the
insufficient financial support for locally driven initiatives proposed
by associations. This restricts the implementation of community-based
actions that are often crucial for addressing context-specific
end-of-life care needs (Funding).
The heterogeneity of practices across regions presents a major barrier
to consistency in care delivery. Additionally, the absence of
standardized monitoring and evaluation tools hampers the ability to
track progress uniformly and identify areas for improvement at the
national level (Resources).
There are significant disparities in access to information across
different territories, exacerbated by varying literacy levels and a
persistent digital divide. These factors limit the reach and
effectiveness of educational materials and online resources,
particularly among vulnerable and underserved populations (Service delivery).
CNSPFV
has boosted visibility of end-of-life issues through co-developed
educational materials, broader stakeholder engagement and the use of
accessible digital tools (e.g., podcasts, videos and easy-to-read
formats). This has enabled wider public outreach and strengthened the
role of civil society in shaping policy.
Some
future actions will be the update of the information guide on palliative
care in collaboration with the National Cancer Institute; continuing
collaboration on the public information website
www.sante.fr as part of the “Périples” projects on the end of life.
Lesson learned:The CNSPFV has become a key factor in advancing end-of-life care in France
by promoting equity, transparency, and particularly through
participation in the governance of the Citizens’ Convention on the End
of Life. Its inclusive governance model, stable funding, and
collaboration with civil society have enabled the development of
accessible, co-created resources and improved public engagement on
palliative care. By involving associations such as the League Against
Cancer, the National Cancer Institute and the Unicancer Federation, a
strong emphasis is placed on palliative cancer care.
However,
challenges such as complex coordination processes, uneven territorial
practices, limited local funding, and disparities in digital access and
health literacy highlight the need for continued efforts to strengthen
consistency, accessibility, and responsiveness across regions. Overall,
the CNSPFV represents a strong foundation for building a more
people-centred and equitable end-of-life system in France including for
people living with cancer and thus works along key principles of the
EBCP.
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