The manager of the children’s hospice Bärenherz in Wiesbaden, Michael Knoll, talks about the daily work and grateful parents in an interview.
Mr. Knoll, how long has the Bärenherz children’s hospice been around?
We opened in 2002, making us the second oldest inpatient children’s hospice in Germany. The oldest has been in Olpe since 1998.
Are there other children’s hospices in Hesse?
No, we are the only one. There are a total of 20 inpatient facilities in Germany. Geographically, we are very well positioned. I don’t see the need for more children’s hospices. It would be much more likely that more nurses would be needed. The shortage can also be felt in our area, which is why many houses cannot fully utilize their capacities.
How many families do you look after each year?
About 150 different families come to our house every year. Around 200 families are currently connected to us. All of these families will receive a message from us in the autumn, where we will inquire about the needs and wishes of the families for planned relief stays.
So what does your house offer families?
The majority of our capacity is used for these relief stays. The children with terminal illnesses come to us for four to ten days. Depending on your wishes, the child can stay with us alone because, for example, the rest of the family would like to take a vacation that would otherwise not be possible. Or the families stay with us together.
And beyond?
We reserve some of our beds for emergency requests. These are used, for example, by families who have just given birth to a child with a life-shortening illness or families who are in a crisis and need support in this situation. There are also families who come to us to support them at the end of their child’s life. That’s about ten cases a year. Most children who come to us do not come to us to die. Children’s hospice work is much more a life companion than a death companion.
What does a stay in a children’s hospice look like?
We take full care of the nursing care and educational support of the sick child, provide it with everything it needs and also offer physiotherapy and animal-assisted therapy. If the family is with you during your stay, they will use the family apartments that are available. Parents usually report that they are happy to give up the things that push them out of their role as parents, such as care work. You can then focus on cuddling, playing, or activities together. We also offer sibling support and family support.
What is the feedback from the families and especially the parents?
What many parents report back is how nice it is to be able to sleep through the night in peace. Not having to be by the child’s bedside with one or both ears or having to give medication at night. The families do not use the time to do the greatest activities, but to recharge their batteries and relax. Also to be able to function again afterwards. It’s also important to have time for yourself when we’re here, like going for a jog in the morning or simply reading a book in peace.
How are the stays financed?
One half is covered by the health and nursing care insurance funds. The other half is financed by donations from the Bärenherz Foundation. For your understanding: We incur costs of 1200 euros per day and child, which are then divided into the two halves of the financing. The foundation currently gives 1.8 million euros annually.
What’s coming up for your hospice?
An extension is currently being built, which we will move into over the summer. We’re closing a big gap that we’ve always had. From then on we have a large supply kitchen in which we can then cook freshly for the families. A new family apartment will also be built there, which will have a direct connection to the children’s room. This has never happened to us before. In addition, we will adapt spatially to the needs of young guests. The cultivation is financed by donations, so our need for donations is quite high.
