Swiss hospice for critically ill children closes a gap in care
6 min read
As many as 10,000 children and young people in Switzerland live with life-shortening illnesses. Because the state does not help support efforts to care for them in special facilities, private organizations are stepping in.
For 9-year-old Xenia Rindlisbacher, Aug. 13, 2024, will be a very special day. The girl, who was born with severe physical and mental disabilities, will be the first child to move into a specialized hospice for children and young people in Switzerland. Previously, such inpatient facilities have existed for adults, but not for children or young people with their families.
Xenia, who was born with a rare genetic defect, needs 24-hour care, which has been provided almost exclusively by her parents. The girl frequently suffers from pneumonia or other illnesses that require surgery. For her parents, this is exhausting. «We are therefore delighted to be able to place our daughter in the trusted hands of professional caregivers for two weeks,» said her father, Urs Rindlisbacher, at a news conference earlier this month.
Life and death together
Switzerland’s first children’s hospice is located in a converted farmhouse in Riedbach, a small hamlet on the outskirts of Bern. As idyllic as these surroundings may be, the fate of the children and their families who are taken in by the Allani Foundation is bitter. These are children and young people with life-shortening illnesses such as cancer, genetic defects or neurological diagnoses.
Children who are seriously ill can spend the last phase of their lives in a children’s hospice, and ultimately die there. They are able to do this in the presence of their family, in a child-friendly environment and with professional palliative medical care. «Children’s hospices are also a place of life,» says Simone Keller, a palliative care expert and member of the Allani Foundation Board. «Families who have been caring for their sick children for years receive the support and relief they need here.» Special attention is also paid to siblings, who are often neglected in the course of everyday life. They are cared for in the new children’s hospice by volunteers and other staffers.
In 2023, the Swiss Federal Office of Public Health conducted in-depth investigations into the need for palliative pediatric care in Switzerland. According to this study, around 10,000 children and young people in Switzerland currently suffer from life-shortening illnesses. There is thus a clear demand for care facilities able to offer such families a short or long break. Nevertheless, it took the Allani Foundation eight years to open its children’s hospice. Allani was the goddess of the underworld of the Hurrians, a Bronze Age people in the ancient Near East.
Switzerland’s first children’s hospice has been built in the cozy atmosphere of a farmhouse.
Patrick Schafer, a member of the foundation’s board of trustees, attributes the long time it took to set up the institution in large part to the fact that Swiss policy simply does not provide for such institutions. «There is no state support that goes beyond the contributions provided by the disability and health insurance systems,» says the theologian, who works as a chaplain at the University Hospital of Bern. These systems cover a maximum of 30% of the costs incurred, he adds.
Switzerland’s first children’s hospice therefore relies almost exclusively on private donors. Donations from foundations and private individuals made possible the renovation of the 17th century farmhouse, which cost about 5.9 million Swiss francs ($6.8 million). Families accompanying their children will pay 50 francs per day, which will primarily be used to help defray the costs of meals.
The foundation already has funding available of 2.9 million francs for the first year of operation and 3.5 million francs for the second year. This is necessary because organizers cannot assume that anything will change in terms of public funding until 2026, Schafer says. The canton of Bern made Switzerland’s first children’s hospice possible by granting it a license as a so-called Spitex facility, which means it functions within the country’s outpatient care system. However, Allani is not recognized as a nursing home, which would allow it to be subsidized by the public sector.
Given these high hurdles, the services that will be available beginning on Aug. 13 are all the more striking. The children’s hospice is offering space for up to eight children or young people. A total of 25 mainly part-time care professionals and more than 165 volunteers will ensure that the children and their parents receive professional care 365 days a year. Children and their families are generally expected to stay in the facility for between one and three weeks.
The historic building’s bedrooms are spacious and equipped with the most modern medical equipment. For example, a supply of oxygen is provided in all rooms. Nevertheless, the facility does not feel like a hospital. This is ensured in part by the play opportunities that designers have created throughout the house. The atmosphere is cozy, in hopes that the children will feel comfortable and secure. Under the old linden tree, both the sick and the healthy will find an oasis of peace.
Parents can stay overnight with their sick children in the family room.
«The facility’s opening is a big dream come true for me,» says Schafer, who also chairs the foundation’s board. «It shows that you can achieve something with tenacity, perseverance and teamwork.» He is aware that the Bern home for children will be able to address only a portion of the large demand, he notes. But similar projects are also emerging 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, outside the city of Zurich. That project is backed 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 provide accommodation for up to eight children or young people, as in Bern, beginning in late 2025. In contrast to the children’s hospice in Bern, the project in Zurich has received money from the canton’s charitable fund, which is providing 6 million Swiss francs to help finance the construction work.
In Basel, the Mehr Leben (More Life) association is planning a palliative care center, also with eight beds, that is designed to be intergenerational. According to the organization’s website, the group plans to offer a place of relief to seriously ill people of all generations and their relatives. The center has not yet set an opening date.
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