A Lively Refuge: Inside the House of Terminally Ill Children at Berliner Herz Hospice

The walls are full of colorful children’s drawings and in the large lounge with the long aquarium, affectionately known as the kitchen-living room, children read aloud or cuddle on the sofa. Birthdays are also celebrated here regularly, says Katja Schröther. “We love life and like to celebrate,” she says. That’s why there was a big spring festival recently.

Parents, children and many volunteers gathered there, had a barbecue, ate cake, organized a quiz and, above all, petted the rabbits in the new small animal enclosure. Not exactly what is generally expected of a hospice for children with “life-limiting illnesses”? But that’s exactly why it’s so lively in the house of the terminally ill children in Friedrichshain, which is a refuge of peace in a new building a few years old not far from the busy Karl-Marx-Allee. The hospice is run by the Humanist Association, which also runs three hospices for adults.

A break for parents

More than 30 full-time employees and around 80 volunteers look after the nine places in the “Berliner Herz” children’s hospice around the clock. Five children are accommodated here permanently, four places are available for children who only stay here temporarily – for example during the night, so that the parents can sleep through the night even though their child needs medical treatment every hour. Children are also looked after as in-patients here when parents need a break to regain their strength or to go on holiday with the other children in the family.

Because this is also necessary so that the entire family does not suffer from the burden. The work of the employees therefore also includes relieving parents of the guilty conscience that they are abandoning their sick children if they take a break. However, it is also possible for parents to stay in the same room with their child.

A memory tree with photos

In addition to medical care and attention, the children also receive inspiration through drawing lessons and music lessons. Thanks to medical progress, children today are getting much older than before, says Katja Schröther. The memory window in the entrance area with the photo of a recently deceased girl or the memory tree with numerous photos attest to the fact that, despite the joy of life that radiates, death is part of it and is not ignored. “It is therefore very important that everything lives and is remembered,” says Schröther, who has a small daughter herself. It is therefore very important for the parents, the family and the sick child to have “self-determined, good last days”.

Some volunteers lend a hand in the house and support the work in a variety of ways, but are not in direct contact with the families’ home environment. For some people, the resulting close bond is too emotionally demanding, says Katja Schröther. However, anyone who has direct contact with children, reads to them, goes for walks with them or visits families in their homes must complete a special qualification course. The volunteers include students as well as older people whose own children have left home and who wanted to give something back to society, says Katja Schröther. They find their efforts “meaningful” and are “impressed by how much strength the families have despite the uncertainty of how long their child will live.”

Death always plays a role. Nevertheless, volunteers talk about emotional moments of joy. A woman reports how happy she is when a child responds to her massaging his feet with a pleasant hum.

The connection with the hospice sometimes continues even after a child has died. Adam K., the father of a deceased child, continues to be involved. He supports the hospice, helps out in the facility, reads to other children or goes for walks with them. The older sister of a deceased child is now also involved as an ambassador for the “Berlin Heart”. She is grateful, she says about her motivation, because she experienced so many positive things in the hospice and was supported even when she and her family were feeling bad.

Hearts for the donors

The health insurance companies cover most of the costs for the house, the treatments and the employees, but the “Berliner Herz” cannot function without donations. A long row of hearts hangs in the hallway, each bearing the name of a donor. Companies are also involved, but most supporters are private individuals. If you look closely, you will also spot celebrities. For example, the rapper Marteria, the Rammstein keyboard player “Flake” Lorenz or the “Bauer- sucht Frau” presenter Inka Bause.

By the way, the next qualification course for volunteers starts on January 23, 2024. If you would like to donate or find out more, you can find all the information at:

2023-11-02 18:03:32
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