In the bill relating to support for the sick and deceased, which is being discussed in the National Assembly, one of the parts of the text refers to palliative care, and especially to the conditions for placement in nursing homes. Designed as mediators between hospital and home, these structures aim to offer multidisciplinary care to people at the end of life. In the origin of these houses, Laure Hubidos, president National collective of residential houses. She founded the first life center – a name she preferred as “house of support” – in 2011 in Besançon, after twenty years of unfailing combativeness. Interview with Laura Hubidos.
How was this day house project born?
Laura Hubidos – The idea dates back to twenty years ago. At that time, I was a volunteer in palliative care at the University Hospital in Besançon, but also at home, where I specifically helped a man suffering from Charcot disease for three years.(1) I realized very quickly that people travel a lot from home to the hospital, for reasons that do not necessarily require treatment, and this is due to the lack of alternative structures. I told myself that it would be wonderful to have a little house where we could take care of people like I did with this man who was instrumental in making this dream come true.
How did the contact with that person suffering from Charcot disease lead you to imagine a different welcome and support?
Laura Hubidos – In fact, we will not die tomorrow either because we are seriously ill or even in a palliative care situation or because we no longer need or want. Except for the last days at the end of life, people can enjoy the little things of everyday life, such as going to the cinema, drinking coffee on the terrace, etc., only in the hospital it is complicated, if not impossible, and it can also be at home, because caregivers are often exhausted and stressed. That’s why I imagined an open place where we would “pamper” these people, where we would enable them to fully experience what they have to experience, and at the same time be fully part of society.
Especially since the end of life can last indefinitely…
Laura Hubidos – In my experience, people, including those with Charcot disease, do not wait to die. This neurodegenerative pathology is often mentioned in the media because it is very serious and very disabling. In a nursing home in Besançon, we supported a young woman who suffered from this disease: she regularly stayed on vacation, taking turns at home. She didn’t speak anymore, she was on a ventilator, and yet she gave life to the whole house, the household and the collective, we took her for a walk, to the cinema… We can bring life into illness.
You do not come from the health or medico-social sector. Was it a handicap?
Laura Hubidos – In the beginning, it is true, my approach was surprising. Rather, she wants to be human first of all. On a personal level, sickness and death were part of my environment from a very early age, whether it was for my loved ones or myself. When I was young, I almost died. While I was in intensive care, the nurse sat on my bed, took my hand and talked to me. I will never forget this woman in my life. I thought about my approach by positioning myself as a potential resident, asking myself how I would like to be supported, how I would like my days to unfold, etc. I wanted a house that felt more like a “guest house” than a health or medico-social structure, with a garden for eating outside and a common living room for a dozen tenants. Only the beds were medical. In addition, we have developed volunteer activities. Every week, the volunteer leader visited the residents and asked them what they wanted.
The patient is at the heart of the system, which probably changes the approach to the end of life…
Laura Hubidos – The fact that I am not a caregiver made this change possible. I am often asked what the difference is between nursing homes and palliative care units. In fact, these two approaches have nothing to do with each other. In the home of life, everything related to medicine is put on the back burner, which is obviously possible only if that area is carefully framed, downstream and even safer than in a health facility.
Was this organization difficult to establish?
Laura Hubidos – We invented everything for the living center of Besançon. It took a while because the way it worked was disruptive to habits. In this off-the-wall configuration, we are completely alone: there is no macrostructure to oversee the organization. We have established specific safety protocols for care plan and medication monitoring. The same was true of end-of-life care arrangements, which were assessed on a day-by-day, even hour-by-hour basis. The admissions committee was responsible for assessing how a person would be admitted. In the city, we found general practitioners who were educated in palliative care or who had an appetite for this type of care, so the relay was provided with the practicing doctor, in cooperation with the family physician coordinator.
You say it disrupts habits. What happened to the caregivers?
Laura Hubidos – Healthcare workers were happy to work as they had always dreamed of. For them, this house was a sort of ideal place for people at the end of their lives. Many testified to this. They could finally take their time. I am referring to one of our residents who had Charcot’s disease. It took 2 hours to get her up and wash her. We set aside this time for her every day.
You remember that at the Besançon Life Center the teams prioritized working…
Laura Hubidos – I would go further: these houses are essentially “care”, in other words “care”. There are technical actions that need to be carried out, of course, but the fact that you are in care allows you to interact with the resident and the caregiver. I trained nurses and even doctors. They do not always know how to understand the end of life, in its human and even psychological dimension. I invited them to let their hearts speak, to take the patients by the hand, to talk to them or to stay with them in silence… but still, there must be time.
Thanks to this attention, some of your residents have been able to prolong their lives, against all odds…
Laura Hubidos – I remember a patient who, according to her doctors, came home on end-of-life support. She suffered from a metastasized brain tumor and was in a coma. We petted her and as the days passed, she seemed to wake up. After a few months, she went for a walk. This return to life allowed him to reconnect with his daughter and move towards peace. From the moment we give someone love and attention and allow them to experience the little things they want to experience, extraordinary things happen that are beyond us.
Reason enough to stay mobilized…
Laura Hubidos – In fact, that is why we especially mobilized with the collective last year when the Citizens’ Convention on the End of Life was established. The experiment carried out in Besançon over three years, with the support of the ARS Bourgogne-Franche-Comté and the council of the department of Doubs, has proven, the time has come to challenge the public authorities. It is a matter of common sense, on a social, health, economic and humanitarian level. These houses provide a downstream solution, after leaving the hospital for respite or a longer stay.
Doesn’t the creation of these support homes risk preventing the development of palliative care units? Let us remind you that about twenty departments do not have a single…
Laura Hubidos – Residential houses are completely complementary, not in conflict with what already exists. Moreover, most of the project managers of supportive homes within the National Community of Residential Homes are carers specializing in palliative care. They contribute to the strengthening of the territorial network regarding access to palliative care. Finally, in Besançon we have always worked closely with the palliative care unit of the University Hospital and with the mobile palliative care teams.
In the past twenty years, you have encountered a lot of obstacles, the bill on the end of life will solve these issues. Does this outcome mark the end of your commitment?
Laura Hubidos – I can say, to some extent, mission accomplished. But I will still make sure that everything is in order, that the spirit of these houses is immortalized. Avoiding any deviation is our company’s responsibility.
(1) Charcot disease or amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by the progressive loss of motor neurons in the brain and spinal cord. Its frequency in France is 2.7 new cases per 100,000 inhabitants. Survival, which varies widely, is generally 3-4 years after the onset of symptoms.