| Part 2. Breaking the Taboo around Death
| Mélina Magdelénat
| Read part 1 of the interview with François Génin, cofounder of Voisins & Soins (Neighbours & Care), a French nonprofit that accompanies people living their final months and days at home.
What form does leadership take in an organization like yours?
Rather than having a leader who feels responsible for a person’s care, everyone is on an equal footing. Psychological support is valued on the same basis as medical care, so volunteers do not feel superfluous. In a hospital, volunteer organizations slot into an existing institution; with us, everyone belongs to a single structure.
This shared responsibility encourages a high dedication from everyone, and fosters a culture in which each person has the opportunity to give their best. It will also be crucial when the time comes to scale the model: there will be no need to find, for each team, a “super manager” capable of making healthcare workers, psychologists and volunteers work well together.
In practice, does this always work smoothly?
There can be difficulties if team members have not been sufficiently trained. This is not a very natural organizational culture in France — people readily defer to a leader.
There is an ongoing exchange with the field so that horizontality becomes natural and lasting. It is painstaking work! Encouraging flexibility requires a sufficiently clear and structured framework, and training people in how to put its principles into practice.
Why is supporting family caregivers central, and how does it work in practice?
I remember my mother-in-law at the time when my father-in-law was still being cared for at home. She was on call day and night.
This reality has direct consequences on the physical and mental health of caregivers. According to a 2015 French study, over a third of seniors living with a dependent person are in a state of psychological distress. Caregivers become exhausted over time, especially when their care extends over a long period. Supporting them is essential.
So we make ourselves available throughout the entire end-of-life period, and afterwards as well. Visits do not stop at the moment of death. We are also in contact with local bereavement support organisations, because we are neither trained nor structured to provide this ourselves.
It’s important for the various actors in a given area working around end-of-life care to know one another: our teams, bereavement workers, hospital palliative care services, funeral services. This currently happens on an ad hoc and informal basis, but we are thinking about formalizing this joint work, in the logic of “compassionate cities.” It’s a model that has yet to really emerge in France but exists in other places: cities that aim, under the auspices of the municipality, to bring together relevant actors so that the end of life ceases to be a taboo hidden behind hospital walls. To bring it back into the heart of the city.
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You highlight the following in your manifesto: “Our modern societies are marked by the erasure of death as an essential reality.” Part of your mission is to “repatriate the reality of death into the field of life.” Do the people who gravitate around the project develop a different relationship with death?
That is what they report. I’ve experienced it myself: death is a reality we don’t necessarily want to face, but which, when one decides to look at it, gives life a particular depth.
The Greek philosophers already said as much: memento mori, the invitation to think of death from the moment one wakes as an invitation to live fully. The more we face this reality, the more it draws us towards what appears most essential towards the end of a life.
At the scale of a city, this effort to break the taboo around death is equally valuable. We sometimes go to local schools to talk about death: when a grandparent or someone close dies, teenagers do not always have the opportunity to put words on what they went through, and being able to do so can be truly liberating. Teachers also report that the collective sharing of vulnerability transforms the atmosphere of the class.
Have you cared for young people at the end of their lives?
The youngest person we cared for was around fifteen. It was of course extremely painful — for him as well as for his parents, who were exhausted; he had a neurodegenerative condition, it had been a long journey.
But it was also an extraordinary time. A strong relationship developed between the whole family and the team. His classmates were able to come and see him: he had had to step away from school for several years because of his illness, and rebuilding those connections was very meaningful. He also benefited from biographical work: a professional writer came to gather his thoughts, the story of his life. It was powerful for him to be able to express himself that way, and for his parents to have that precious record to keep.
Mélina Magdelénat is the founder of Cara, a French organization dedicated to building better care systems. She also writes about innovative care models in her newsletter, The Fifth Wave.
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