Scientific strategy
Definition of end-of-life research
The National Platform for End-of-Life Research, in carrying out its missions, focuses on the field of research understood as:
All actions undertaken to produce and develop scientific knowledge seeking to describe, understand and explain the phenomena surrounding the end of life and death.
This may involve clinical research as well as fundamental research, theoretical, empirical or experimental, interventional and observational approaches, literature reviews, experimental research (including with animal models), etc., in all disciplines.
This research may be conducted by scientists, engineers, researchers, researchers in the field, or by the general public
This research can be conducted by academic researchers, professionals from the healthcare field or patient-partners working in conjunction with research teams.
Furthermore, "end of life" is understood here as:
The situation of people whose state of health suggests a short- or medium-term life-threatening prognosis, in the context of aging, the progression of one or more diseases or an accident, regardless of age.
The Platform will be interested in research aimed at identifying the various issues involved in the support, treatment and care provided to these people, their loved ones, and the practices and experiences of care teams, volunteers, sufferers and, more generally, all those involved in these situations. They may also concern the role of associations and institutions in our societies' relationship to the end of life and death.
These issues may be medical in nature, but also political, legal, biological, economic, sociological, historical, ethical, psychological, and so on. They may concern the period preceding death, the terminal phase, but also issues subsequent to death such as mourning, funeral rites or the media treatment of particular clinical cases. Finally, also included in the field of end-of-life research are works on our contemporary relationship with death, at political, societal, anthropological and philosophical levels.
This definition was drawn up by members of the Platform's Bureau and Scientific Council following meetings held on January 28, 2020.
Research priorities
New figures at the end of life: should healthcare organization and patients' rights evolve?
What are the new figures at the end of life generated by contemporary medicine? How do these new realities call for a rethink of the organization of care or of the law? How can we adapt to new end-of-life situations linked to new threats such as emerging diseases and global warming? The health crisis linked to the Covid-19 epidemic and the heat wave of 2003 were sad examples of our society's lack of preparedness to deal with a massive influx of sick people, who ended their lives alone, sometimes in deplorable conditions. Research will contribute to finding solutions to prevent such tragedies from happening again
Public health policies for development and access to palliative care: how can we innovate to improve care trajectories?
What are the specific needs associated with pathologies such as cancer or neurodegenerative diseases? How can we care for vulnerable populations (children, people in precarious situations, people with disabilities, migrants)?
With most people saying they want to die at home, how can we go about strengthening support for people and their loved ones through new forms of solidarity? We need to consider a variety of pathways, locations and forms of support.
How can we improve bereavement support in contemporary societies?
Grief has consequences in terms of public health, employment, schooling... Improving the way they are handled would help reduce their impact on society