Detecting society’s problems early and contributing tangible solutions to address them is one of Fondation de France’s key characteristics. In the 1980s, it started to focus on an issue that was hotly debated in social and political circles: palliative care. Thirty years later, Fondation de France enabled significant societal and legal progress to be made on this topic. We review the highlights of this engagement.
The 1980s – a turning point in palliative care
End of life has long been associated with pain, suffering and loneliness. France became aware of the importance of palliative care in the 1980s, against a background marked by the first cases of AIDS emerging, with no treatment available.
Fondation de France swiftly addressed the problem and supported the first French palliative care units, in Bordeaux and Lyon, in 1988. It then started to think through how to improve conditions for people at the end of their life and turned this analysis into a project, by launching the Palliative Care and Support Program in 1989. “You need to be able to work over a long time-scale to produce lasting and structuring solutions,” explained Axelle Davezac, Fondation de France Chief Executive Officer, in January 2020.
The creation of the Société française d’accompagnement et de soins palliatifs (French Society for Support and Palliative Care – Sfap), a learned society that brings together professionals and volunteers to encourage access to palliative care, marked the end of this decade. Fondation de France largely contributed to the development of this organization, which still plays a major role in the development of palliative care and end-of-life support.
Defining palliative care
Palliative care is “active and continuous care practiced by a multidisciplinary team, in collaboration with volunteer helpers, in an institution or at home. It aims to relieve pain, allay mental suffering, preserve the patient’s dignity and support their family and friends. Its goal is to maintain the best quality of life possible until death.” It represents a more humane form of medicine that is centered around the patient rather than their condition.
The 1990s – Supporting patients, helpers and healthcare workers
Once these pioneering projects were set up, one fact became obvious: the pain that affects end-of-life patients is shared by their loved ones and healthcare workers. Support for workers and families became one of Fondation de France’s priorities.
Films on the anguish of healthcare workers were produced, support groups were facilitated, working groups were set up and so on. In 1992, Fondation de France put in place mechanisms to provide them respite. At the same time, Fondation de France encouraged families to be welcomed in care organizations and retirement homes, by creating dedicated areas such as “family lounges.” It also funded support groups for grieving families.
Finally, in 1996, France tackled the painful issue of children at the end of their life, by promoting think tanks and the sharing of best practices.
The 2000s – Significant progress
Thirty years after the implementation of the Palliative Care and Support Program, which became the Care, Relieve, Support Program, remarkable progress was made in the palliative care field. First of all, the law of June 9, 1999 confirmed that government agencies recognized palliative care. This translated into public funds for creating new palliative care teams and networks, and for training volunteers.
The law of April 22, 2005 then entered into force and prohibited aggressive therapy, enabling patients to die free of pain and supported. “We consider that, three decades later, the ecosystem is now in place, even though there are still improvements to make of course,” adds Axelle Davezac.
The early 2010s – Supporting research
In the early 2010s, Fondation de France supported research in social science on the end of life, serious conditions and support. It was necessary to encourage research, both on ethical (the issue of euthanasia for instance) and organizational aspects of palliative care.
“More globally, this project shows what social innovation is. It requires identifying a problem, engaging a range of different stakeholders, selecting the best projects, supporting and funding them over the long term and disseminating results and practices to help make changes to legislation,” concludes Francis Charhon, the former chief executive officer of Fondation de France, which contributed to societal progress on the issue of palliative care.
Milestones
1986 : a government circular makes palliative care provision in France official.
1988 : Fondation de France supports the development of the first palliative care units.
1989 : Fondation de France creates the Palliative Care and Support Program.
The law of June 9, 1999 guarantees access to palliative care for people at the end of their life.
22 avril 2005 : this law marks a change in legislation by significantly reinforcing the rights of patients and condemning aggressive therapy.
2010s: support for social science research projects on the end of life.
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