Accompanying a loved one through their final days is an experience of rare intensity.
Beyond the care provided to the person who is ill, this period profoundly affects family caregivers, who often carry a significant emotional, physical, family, and sometimes financial burden.
At Aux trois sentiers, we see every day how central family caregivers are to end-of-life support—and how this experience does not end at the moment of death. What is lived in the days leading up to death, the quality of support received, the space given to the caregiver’s own needs, and the continuity of support after the loss can all leave a lasting imprint on the grieving process.
That is why we are very pleased to announce that the Foundation of the Fédération des médecins spécialistes du Québec (FMSQ) is providing financial support to Aux trois sentiers for an action research project dedicated to family caregivers.
For Dr. Caroline Ouellet, anesthesiologist-intensivist at the CHUM and president-founder of our organization, this project responds to a clinical and human need that has become impossible to ignore:
“For far too long, family caregivers have been expected to take on the role of caregiver, especially when end-of-life takes place outside the hospital. Yet being a family caregiver at end of life is a role in itself—one that we must better understand in order to facilitate both end-of-life support and the grieving period that follows. This research project adds another stone to the foundation of the best possible support we must offer them, far beyond traditional medicine, during a moment of great vulnerability.”
Understanding Needs at a Critical Time
This action research project seeks to better understand the needs of family caregivers during a particularly critical period:
- the 20 days leading up to death
- the post-death period, which may extend up to 12 months
The objective is clear: to document the real needs experienced in the field in order to sustainably transform clinical and psychosocial practices in palliative and end-of-life care.
Through this initiative, we aim to:
- better understand how needs differ depending on the setting (home, hospital, hospice)
- identify practices that support the emotional and mental availability of loved ones
- strengthen psychosocial continuity before and after death in order to help prevent certain grief-related complications
A Valuable Alliance Between Practice and Academic Research
This project will be carried out in collaboration with three dedicated researchers from UQAM:
- Nathalie Lafranchise, PhD , Full Professor, Department of Social and Public Communication
- Isabelle Dumont, PhD , Professor, School of Social Work
- Marie-Emmanuelle Laquerre, PhD , Professor, Department of Social and Public Communication
Through this action research project, we will be able to bring into dialogue the knowledge emerging from palliative care practice, the lived experience of family caregivers, and academic research, in order to co-create practical tools that are useful and deeply rooted in real-life experience.
As Nathalie Lafranchise shares:
“Deeply marked and shaped first by the loss of my mother in 2019, and then by that of a close friend in 2024, I came to realize how essential it is to help provide compassionate, human-centered support to as many family caregivers as possible who are supporting loved ones at the end of life. I am committed to making a difference for all of these individuals. It has become my mission.”
As Isabelle Dumont highlights:
“Giving a voice to family caregivers where they truly are means honouring the depth of their lived experience at a pivotal moment and transforming it into concrete, human support practices—both before and after death.”
Marie-Emmanuelle Laquerre expresses this same vision with equal clarity:
“It is often through hardship, as the end of life approaches and after death, that we most vividly grasp the need for deeply human care—care capable of holding suffering, relationship, and dignity. This action research project will help transform practices based on the real lived experience of family caregivers and build, with them and with care environments, responses that are more sensitive, better adapted, and more humane.”
Concrete Benefits for Loved Ones… and for the Entire Network
Beyond the research itself, this initiative will lead to the creation of tools that can be transferred across Quebec. Planned deliverables include:
- a synthesis report and knowledge-sharing activities
- an educational and demystification tool for family caregivers
- a clinical tool designed to help care teams better identify caregivers’ needs
- knowledge transfer content for palliative care practitioners and clinical teams across the healthcare network
The benefits will directly support:
- family caregivers across Quebec
- the teams of Aux trois sentiers’ Rapid Response Unit
- partner organizations
- palliative care homes
- institutions within the health and social services network
Giving a Voice to Those Who Care in the Shadows
The Foundation FMSQ’s support is far more than funding. It is an essential lever for advancing a more humane, coherent, and reality-based approach for family caregivers.
Above all, it will help give a voice to those who care in the shadows, so that their lived experience can concretely shape the practices of tomorrow.
The Aux trois sentiers team deeply believes that it is at the intersection of practice, listening, and scientific rigour that lasting transformations are born.
