New York City, New York, United States
Gardanne, the last stop on the local train from Marseilles to Aix-en-Provence, was once a thriving mining center. Today, with only one hotel, a few restaurants, and no monuments worth mentioning, the town has little to entice the crowds of tourists who flock to its better-known neighbors to the north and south. Cézanne lived there for a year in the mid-1880’s, but the raw, jagged landscape that attracted the artist is now buried under cookie-cutter houses, a power plant’s massive cooling towers, and a bauxite conversion factory overshadowing the train station.
On the northern outskirts of town, however, an unassuming one-story building has brought Gardanne to the world’s attention—a palliative center known simply as la Maison, which means “Home” in French. Established more than 15 years ago by a group of AIDS activists, la Maison has become known throughout the French-speaking medical community because of its unique work environment and philosophy of openness and patient-centered care. I had the privilege of visiting the center many times and lived there for a month while making a documentary. Though I speak French fluently, my observations are necessarily those of a foreigner and an outsider, but one with unusually free access.
Residents (la Maison does not call them “patients”) live in private rooms on two floors. Most come for end-of-life care; others arrive for a short-term stay to relieve their families, who are often overwhelmed by the demands of caring for relatives who are seriously ill. There are no fixed visiting hours. Family members can sleep in their loved one’s room or in either of four guest rooms. Everyone—staff, residents, and visitors—eats lunch together in the center’s elegant dining room.
Offering an unusually high level of care, la Maison’s 30 volunteers and 75 salaried employees (including caregivers and support staff) care for the home’s 24 residents. Operating on 12-hour shifts, caregivers are divided into two teams of two nurses, four nurses’ aides, a doctor, a physical therapist, and a psychologist. No one wears white coats or identification badges, and everyone, staff and residents, is on a first name basis. At the dining table it is impossible to distinguish nurses from service workers.
The rooms are bright and spacious and lead either to the surrounding landscape or an open inner courtyard filled with palm trees. This layout allows both openness and privacy. Sunlight fills the building throughout the day. In the hallways, plants and flowers have replaced oxygen tanks, wheelchairs, and IV stands. Unlike the common practice of most medical facilities, la Maison’s staff always knocks before entering a room out of respect for residents’ privacy. There are no set hours to begin the day, with lunch being the only scheduled time. Residents who are unable or unwilling to come to the dining room have meals brought to their rooms.
At the front door, a large, high-ceilinged lobby creates a homey atmosphere. Bathed in sunlight, the entrance opens into a children’s play area on one side and, on the other, a brightly colored room with two oversized, upholstered chairs— the kind that are hard to get out of. To the right is the reception area, though nothing identifies it as such. Visitors are greeted by the receptionist, or the center’s volunteers coordinator. Behind the desk is a large room for the administrative and finance staff, and the offices of the head of administration and the medical director (who usually arrives accompanied by his elderly black Labrador retriever).
The French social security system covers most of the operational cost of la Maison. Patients’ supplemental insurance pays a nominal charge of 30 Euros a day.1 In any event, no one is turned away. Asa nonprofit organization with a board of directors, la Maison fundraises through concerts by well-known entertainers and the auction of resident artwork. Fundraising covers expenses not reimbursed by the government contract, which includes part of the center’s operating expenses as well as the salaries of an art therapist, a medico-esthetician, and others. One of the special events is a bi-annual musical extravaganza staged in Marseilles’ largest theater, which features the entire staff singing and dancing in elaborate homemade costumes.
Communication is the unifying element in the daily routine. Nurses and nurse’s aides meet twice a day at shift changes to exchange information and give out assignments. The work schedules are organized so residents see the same caregiver for the entire day, one of many ways that la Maison provides continuity of care and reassurance. Members of the two teams also meet for an hour in the afternoon, and all staff members, including the service workers, are invited to attend.
Caregivers keep detailed, handwritten logs for each resident to record changes in their physical or mental conditions, as well as their daily medications. Once a week the senior staff—directors, doctors, nurse coordinators, and psychologists—meet for two hours to discuss the patients. The two psychologists on staff are available to caregivers as well as residents, and consulting psychologists hold monthly small group therapy sessions for all employees.
Though work at the center is extremely demanding and stressful, an overall feeling of calm prevails. Unlike a traditional medical facility where most of the patients recover and leave, approximately 80 percent of those who pass through la Maison die, either at the center or at home. Since most attachments will be short-term, caregivers learn how to strike a balance between being self-protective and being empathetic and responsive to residents’ needs. One way the staff does this is by looking out for each other’s welfare like in a traditional family setting. Schedules are flexible, and time moves at a slower pace. Though residents are checked regularly and have call buttons in their rooms, they do not have to participate in any of the center’s various activities. They can wear their own clothes. Those who are mobile are free to roam around. It is not unusual to see a resident sitting in the dining room having a cup of coffee at 5:30 am.
Aline and Sabine
As in all palliative care centers, the emphasis is on patient comfort and relief from pain. In addition to the two physical therapists, all the nurses and nurses’ aides are trained in massage, and many of the residents take advantage of this on a regular basis. However, it is not an idle pleasure: one of the center’s aims is to maintain residents’ autonomy as long as possible, and regular massage—particularly of the legs and feet—is one way to achieve this. The center encourages physical touch and views it as an important part of caregiving. The staff has the time for small gestures—a hand on the shoulder, a hug, or a pat on the back—that are often forgotten in a more pressured atmosphere. Rubber gloves are worn as infrequently as possible to increase the value of human warmth.
Maintaining the facility’s cleanliness is a daily, on-going task, since any infection would spread quickly. When a patient dies, cleaning and sanitizing the room takes at least four hours. Personal hygiene is important for the residents as well. Each floor has a specially-equipped room with a large bathtub and a sling, so even patients who are bedridden or in wheelchairs can be bathed regularly. Those who are unable to brush their teeth have it done for them. A beautician, trained as a medico-esthetician, comes in twice a week to do women’s hair and makeup, and a volunteer barber from Gardanne cuts the men’s hair.
Food and savoring it play an important role in the center’s philosophy of caregiving. The dining room is set with tablecloths, silverware, white china, and glassware for both lunch and dinner, and wine is served. Patricia, the head chef, first came to the center as a volunteer working in the dining room, as did several others who are now working as caregivers. She was a bookkeeper by profession, but when a cook’s position opened up, she taught herself how to cook and plan menus so that she could apply for this job. She sees herself as a caregiver. The center believes that one should not be deprived of the pleasure of eating good food at the end of life. For the residents, good food is a kind of medicine, something with which few French people would argue.
Despite an atmosphere that strives to affirm each resident’s life, this is a facility where death, or imminent death, is always present. A red lamp on a table outside the dining room is lit when a resident dies, and the time of death is recorded in a small notebook kept in one of the table’s drawers. La Maison has a small mortuary, a viewing room, and a nondenominational chapel. Over the years, the center has developed ways of including families in all stages of the residents’ care, from the time they arrive, during their stay, and when they die. Families can write comments in a large notebook on the table next to the lamp. These heartbreaking comments give a sense of how la Maison has touched the lives of so many people
Almost all palliative care centers in France are attached to hospitals, which makes dealing with the medical bureaucracy easier. To set up and maintain an independent center like la Maison today would be difficult and time-consuming. Many of the people working at the center, including three of the founders, have been there for more than ten years. The turnover among the nursing staff is higher. Many nurses are younger, and they often look for less demanding jobs that allow them to maintain a normal family life after a few years.
Unique in design, la Maison functions as the result of many years of trial and error by a group of gifted and dedicated professionals who have been able to create a sense of community, warmth, and caring under difficult circumstances. Not to be followed blindly, many of la Maison’s practices could serve as an inspiration, not only for palliative care centers, but for hospitals, nursing homes, and medical care in general.
ERIC BREITBART is a freelance documentary filmmaker. Based in New York, he has been working in film and video for more than 40 years. Last fall, he finished a film about la Maison, its philosophy, and organization. Geared towards students in nursing and medical schools as well as the general public, the film is available in both French and English-subtitled versions. Because the Francophone palliative care world is somewhat isolated, the film hopes to share the center’s experiences with similar organizations in the United States and English-speaking Canada.
This article is based on Eric’s experience of making the film. An excerpt of the documentary can be seen on his website at www.breitbartfilms.com. The DVD, in French with English subtitles, can be ordered at firstname.lastname@example.org.
This article has been translated into French. View PDF for the French version.