There are up to 10,000 children and young people living in Switzerland with life-shortening illnesses. Their care in special facilities is not supported by the state.
A playroom ensures that the seriously ill children can distract themselves.
August 13, 2024 will be a very special day for 9-year-old Xenia Rindlisbacher. The girl, who has been severely physically and mentally disabled since birth, will be the first child in Switzerland to move into a specialized children’s and youth hospice. Until now, such inpatient facilities have only existed for adults, but not for children and young people and their families.
Xenia, who was born with a rare genetic defect, needs 24-hour care and attention, which is provided almost exclusively by her parents. The girl repeatedly suffers from pneumonia or other illnesses that require operations. This is draining the parents’ energy. “We are therefore very happy that we can entrust our daughter to professional carers for two weeks,” explained her father Urs Rindlisbacher at a media conference on Thursday.
Life and death together
Switzerland’s first children’s hospice is located in a completely converted farmhouse in Riedbach, a small hamlet on the outskirts of Bern. As idyllic as the surroundings are, the fate of the children and their families who are taken in by the Allani Foundation is just as hard. These are children and young people with life-shortening illnesses (cancer, genetic defects, neurological diagnoses).
Seriously ill children can spend the last phase of their lives in a children’s hospice and also die there. This is in the presence of their family, in a child-friendly environment and with professional palliative care. “But children’s hospices are also a place of life,” says Simone Keller, palliative care expert and Allani foundation board member. “Here, families who care for their sick children for years receive the support and relief they need.” Special attention is also paid to siblings, who are often neglected in everyday life. They are cared for in the new children’s hospice by volunteers, among others.
In 2023, the Federal Office of Public Health (FOPH) carried out in-depth investigations into the need for pediatric palliative care in Switzerland. According to this study, around 10,000 children and young people in Switzerland suffer from life-shortening illnesses. There is therefore certainly a demand for childcare places for families to take a shorter or longer break. Nevertheless, it took eight years for the Allani Foundation to open the children’s hospice. Allani was the goddess of the underworld of the Hurrians, a Bronze Age people in the ancient Orient.
Switzerland’s first children’s hospice was created in the homely atmosphere of a farmhouse.
Patrick Schafer, a member of the foundation’s board, attributes the institution’s long period of development not least to the fact that Swiss politics simply do not provide for such institutions. “There is no state support that goes beyond the contributions from the disability insurance and health insurance companies,” says the theologian, who works as a pastor at the Inselspital in Bern. These cover a maximum of 30 percent of the costs incurred.
Switzerland’s first children’s hospice is therefore almost entirely dependent on private donors. Donations from foundations and private individuals made the 5.9 million Swiss Franc renovation of the 17th century farmhouse possible. The families who accompany their children pay 50 Swiss Francs per day. This is mainly for food.
2.9 million francs for the first year and 3.5 million francs for the second year of operation are also already available. This is necessary because one cannot assume that anything will change in terms of public funding by 2026, says Schafer. After all, the canton of Bern made Switzerland’s first children’s hospice possible by granting it a license as a home care service. However, Allani is not recognized as a nursing home that would be subsidized by the public sector.
Given these high hurdles, the offer that will be available from August 13th is all the more astonishing. The children’s hospice has space for up to eight children and young people. 25 nursing staff, most of whom work part-time, and over 165 volunteers ensure that the children and their parents receive professional care 365 days a year. The children and their families’ stay is usually one to three weeks.
The bedrooms in the listed building are spacious and equipped with the most modern aids. For example, all rooms are supplied with oxygen. Despite this, there is no hospital atmosphere. This is ensured by the play opportunities that have been created throughout the building. The atmosphere is homely, so that the children feel comfortable and safe. Sick and healthy people should find an oasis of peace under the old linden tree.
In the family room, parents can stay overnight with their sick child.
“The opening is a dream come true for me,” says the foundation’s president, Schafer. “It shows that you can achieve something with persistence, endurance and teamwork.” He is aware that the Bern children’s home can only cover part of the great need. But things are also happening in other regions of Switzerland.
Groundbreaking ceremony in the canton of Zurich
On June 27, the foundation stone for the Flamingo children’s hospice was laid in Fällanden. The project is being supported by the Swiss Children’s Hospice Foundation, which was founded in 2009 by affected parents and supporters of the children’s hospice movement. The children’s hospice, on a plot of land near Lake Greifensee, is expected to accommodate up to eight children and young people from the end of 2025, as in Bern. In contrast to the children’s hospice in Bern, the project in Zurich has received money from the canton’s charitable fund. The construction is being supported with 6 million francs.
In Basel, the association “More Life” is planning a palliative care center with eight beds that is designed for all generations. Seriously ill people of all generations and their relatives should find a place of relief here, according to the organization’s website. An opening date for the center has not yet been set.
