FAZ readers help: Interview with the Löwenzahn children’s hospice service

Mr. Haase, you are the managing director of the Löwenzahn children’s hospice service. Does that mean you only deal with dying children?

Haase: We deal with children who are seriously ill and will die in the foreseeable future. However, we have support periods of up to 15 years. That means we don’t deal directly with dying children. But it is foreseeable what will happen in the end.

Still, it’s an arduous and sad task, isn’t it?

Haase: In fact, we really enjoy supporting the children and young people. We don’t accompany the last phase like in the adult hospice service, but we accompany a very long piece of life. The children and young people look forward to us. We look forward to them, and then we just do awesome things that wouldn’t be possible otherwise.

But how do parents take it when they find out that their child has a life-shortening illness?

Lüttke: You fall into a real state of shock. From then on, nothing in the family is the same as it used to be. Everything collapses, including the entire network. Suddenly, plans can no longer be implemented, friends, relatives and acquaintances withdraw. The family is left alone with the situation because others cannot deal with it at all.

Who will help these families then?

Lüttke: Beyond acute medicine? None at all, to be honest.

Haase: When the diagnosis is made in the clinic, the parents fall into this hole. Then they have six months of socio-medical follow-up care, and then they are completely alone. And if by then they haven’t managed to accept it in a way that they get help or are willing to get help, they stay in this hole – until we find them.

How do you find these families?

Lüttke: We are making contacts, as is the case here in Frankfurt with a special needs school. There are 120 children there, about 60 percent of whom have terminal illnesses. The families are well connected to the school, the parents have trust, which is very important.

Haase: The families won’t find us by themselves. This is one of the major problems of children’s hospice work in Germany, also here in Frankfurt.

How do you help once you have found the families?

Lüttke: We bring our volunteers into the families. We train them beforehand, prepare them really well for this task. Then they go into the family and bring a piece of joie de vivre, quality of life and normality. Because these families no longer have them. They are faced with heaviness, with problems, with filling out forms because they have to take care of everything. We see the family as a system. First of all, of course, the sick child, but quite often there are also siblings who are also doing very badly.

Because everything revolves around the sick child. . .

Haase: In practical terms, that means: no children’s birthday parties for siblings, no baking of cookies at Christmas, not even just going to the swimming pool. There is no longer any planning. If the sick child has a crisis, everything is thrown over. The siblings often lack sufficient support from their parents, because their concentration is rightly and understandably at the bedside.

Do the volunteers do something with the siblings or do they help the parents fill out forms?

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