AFP
In the south of France, a “home” that runs end-of-life care
A “bonus year” is the life time that HIV-sufferer Soizik Carbonell, 72, believes he has gained since attending “La Maison” and its green patio, a leading palliative care facility near Marseille, France. Once a week, the woman with the gray curls comes to recharge her batteries at La Maison de Garden, an alternative destination in the south of France that welcomes people suffering from terminal illnesses, who are running out of time or who cannot hope for a cure. A former hairdresser who had one leg amputated has found comfort and humanity there for nearly fifteen years that she lacks in the unsanitary apartment where she lives alone. says By attending this place, where we can escape to words, meditation, dance or painting workshops, “I grew in my mind and accepted my illness. Like.” Built 30 years ago to welcome AIDS patients to their own devices, the facility has everything going for it. Here, neither endless cold corridors, nor white coats, nor the frantic pace of the hospital department. A library corner decorated with paintings and sculptures, a fireplace lounge with soft sofas and dried flowers, a white grand piano at the entrance. Patients and medical staff, always inseparable, coexist there for a day, a few weeks, years. , sometimes to the end.” It’s a little bit between the hospital and the home – because we’re still a health institution where we do a lot of medical things but we try to hide it as much as possible”, explains doctor Julie Deleuze-Dordron. is All medical treatment can be provided except for chemotherapy, which requires hospital preparation, but “the idea is that people don’t feel like they’re in a hospital.” The development of such support centers, “where listening space and well-being are as important as care”, is one of the French government’s priorities to fill the gap in the field of palliative care. Life will be presented to the National Assembly in May. – “Ethical rebellion” -relief of physical pain, bring peace of mind, improve quality of life, support throughout the journey and as soon as possible: this is what guides the palliative care staff. “If a person has a physical problem, we will solve it, whatever the consequences. That means we will give sedatives and anxiolytics, even if it accelerates the end of life”, Jean-Marc La Piana, charismatic founder of La Maison de Garden , explains to AFP. And then “we have a moral dilemma, (. . .) that is something that is taken into account.” It was in London, in 1967, that St Christopher’s Hospice was founded by Dr Cicely Saunders, “an international reference for palliative care”, recalls Pierre Moulin, lecturer in social psychology. Health at the French University of Lorraine. “Until the 1960s, death was the embodiment of drug failure so no one was interested”, he recalls. “We start with a moral revolution by deciding that people often abandon their lives, die in absolutely terrible conditions”, to create an establishment where they will be cared for by a multidisciplinary care team. In France, the first palliative care unit was built in the late 1980s. – “It looks good” – Under the glass ceiling, in the painting workshop, Soizik Karbanel concentrates on his palette. Before La Maison, “I didn’t know that I knew how to draw, to paint. Now I make paintings, I escape. It’s terrible how good it is!” Beside him, around the table covered with paint and brushes. was There are hands that tremble but trace lines, cannot speak words but smile. At the same time, in a room scented with orange blossoms, sociologist Ursula Cassis sets up a makeshift beauty salon. “We work on self-esteem,” she says. “It’s important.” Antoinette, 53, to whom he gives a gentle facial, has trouble speaking but manages to tell him: “It feels good.” Today, the end of life can be measured in months or even years and is palliative. Care is not reduced in the last days. Romain, 35, knows it will last. A sad-looking young man has lived here for many years, confined to a chair due to a chronic illness that has robbed him of all autonomy. He can’t even hold his cigarette, which Morgan, the coordinating nurse, holds for him until the last drag. The house is also a possibility for patients to settle in a situation of therapeutic nomadism, thrown from structure to structure. Structure for lack of proper organization. Like Tina Setty, 56, left-sided hemiplegic following breast cancer that metastasized. Arriving here a year ago after going through a follow-up care center and rehabilitation and hospital, she is waiting for a place in a therapeutic residence in Marseille where she can regain some autonomy and get her dog Pamela back. Until then, this former Air France technician with short silver hair has no place in the hospital. “I’m tired of waiting for everything, waiting for the Departmental House for Disabled People to give me my apartment, waiting for a robotic chair”, he said. But “it’s better to be here than at home alone.” Before lunch, piano notes and songs by Aznavour or hits from the 80s were sung in chorus by the residents at La Maison. – “Insufficient supply” – such “unconventional” structures can be counted on the fingers of one hand in France, compared to Great Britain, Denmark or Canada, where there are 27 in Montreal alone, explains Claire Fourcade, president of the French Society for Palliative Care Support. At Saint-Joseph Hospital in Marseille, in the palliative care unit, the same philosophy of care but a different environment. A number of doors, one of which shows a yellow light, a sign of recent death, line a long soulless corridor. In Room 2012, the television is broadcasting an animal documentary when two hospital clowns enter with a plastic trumpet and ukulele to entertain 83-year-old Francois Garcia. The blue-eyed former shipbuilder is on life support after complications from pancreatic cancer. He was transferred to the unit a fortnight ago. “They are very nice”, says the six-year-old. “They are trying to get me home. But at home, my wife is alone. We have to put a medical bed, a gallows, in the whole mess, even if the nurses come, they won’t do it.” In the region, like nationally, “we have a large number of patients who do not have access to palliative care structures, whether at home or in hospital, and therefore face catastrophic situations at home”, says head of department Alix Doucet. is – “Time of life” – At the end of 2021, there were 171 palliative care units in France, according to the 2023 Atlas of Palliative Care. Supplies are “largely insufficient to cover needs” with only about 50% of patients being provided, the Court of Auditors noted in July. And regional disparities are evident. In 2021, 21 departments, including Ardennes, Gers, Lozère, Pyrenees-Orientales or Guyana, did not have a palliative care unit. At La Maison de Garden, out of three admission requests, only one is accepted on average (the investment is fully covered by social security). A report on a strategy for palliative care, submitted to the government in December, recommends building 100 such “houses” over ten years. The end-of-life bill, President Macron detailed, would open up the possibility for certain patients to request “assisted death” under “strict conditions” – neither assisted suicide nor euthanasia as is done in the Netherlands or Belgium.” As long as everyone has access to palliative care. , I think we risk depriving patients of life time because they will be disappointed or because their pain will not be treated”, analyzes Doctor La Piana. Let’s take good care of people and then, if they want to die, fine”, concludes the director of La Maison.jra/iw/dp
