When they hear the word hospice, many think of the last days of life and dying. Children also die in the Wiesbaden children’s hospice Bärenherz, but the focus is on spending time together with families. The hospice sees itself as a “place of life”.
Being able to sleep through the night – that’s something special for Jeanette Ott. In everyday family life, there is usually too little time to relax, because her 17-year-old daughter Catherine has to be cared for around the clock. As a guest at the Bärenherz children’s hospice, Jeanette Ott can now sleep through the night and recharge her batteries. With her husband and youngest son she is for a week on a so-called relief stay in the Wiesbaden facility. During this time, Catherine is cared for by Bärenherz employees in the care ward.
Most of the inpatient stays at the Bärenherz served to relieve the families who otherwise cared for their sick children at home as outpatients, explains director Michael Knoll. This could be necessary at a critical time or as a kind of care leave for the parents. “In everyday life, the role of parent is often neglected, you are the caregiver of the child,” explains Knoll. If the care is taken over by others in the hospice, then “you can just be a mom and be responsible for cuddling”.
February 10th is “Day of Children’s Hospice Work”, which was launched in 2006 by the German Children’s Hospice Association. The Bärenherz is one of the oldest children’s hospices in Germany. The facility has existed since 2002. A lot has happened since then, for example in terms of content, says Knoll. The employees have learned more and more how to accompany children, parents and siblings well. Caring for siblings has been an integral part of the Bärenherz program for around ten years.
The Wiesbaden children’s hospice is growing at the moment – an extension is being built in order to be able to look after young people better. “The children and guests we accompany are getting older,” says Knoll. This also poses a greater challenge for nursing, as the patients are getting bigger and heavier. Caring for seriously ill children is a very special task, emphasizes Knoll. In contrast to the work in the adult hospice, parents and siblings play a much larger role, and sometimes aunts, uncles or friends also need psychosocial support.
Catherine Ott was born with Down syndrome and had to be operated on on the second day of life. During another operation, the trachea was injured, as Jeanette Ott explains. Many more hospital stays followed. “The doctors said she would only be three years old,” says the mother. Catherine is confined to a wheelchair, has to be constantly supplied with oxygen and is given high doses of pain medication.
The 17-year-old has ten siblings – between the ages of 35 and 15. The extended family recently went on a trip to an amusement park, says Jeanette Ott. “It was a great day and Cathi really enjoyed it.” When everyday life is particularly difficult, they support each other. “Sometimes Cathi takes my hand and says: ‘It doesn’t matter, we can do it,'” says the mother, who is also dependent on a wheelchair.
“We are there for the families from the moment the diagnosis is made,” says Daniela Eisenbarth, head of Bärenherz’s outpatient children’s and youth hospice service. “It’s more of life support than death support.” Around 90 percent of children with life-shortening diseases are affected from birth, around ten percent are affected by another disease such as cancer or the consequences of an accident. The families are supported in all phases, for example when more siblings are born, says Eisenbarth. Quite a few children would be accompanied into young adulthood.
Bärenherz currently looks after around 200 families from all over Germany. Among other things, it is about coordinating the periods for relief stays, says Knoll. In addition, there are emergency beds for acute crises, when the nursing service suddenly breaks down at home or a child needs palliative care. The outpatient service from the Bärenherz Hospice currently helps around 45 families in their everyday lives, some of whom have several seriously ill children.
It’s also about educational work, because many people shy away from the term “hospice,” says Eisenbarth. “But this is not a place of death, we are a place of life.” When a child dies, bereavement support is offered to the family. In addition to psycho-social help, this could also mean taking on formal tasks such as organizing the funeral for the family – if that is desired, says Eisenbarth. Once a year, Bärenherz organizes a memorial day where the families of the deceased children commemorate. Eisenbarth explains that there are offers for employees to stay mentally healthy. “It’s about empathizing without suffering.” With all the closeness that arises when caring for a dying child, it is important to also take care of yourself.
In the last phase of life, palliative care is primarily about freedom from pain and fear for patients, explains Knoll. “And we ensure deceleration.” The parents are given the space and time to say goodbye to their child. The point is to fill the time between death and the burial with content and thus to take away some of the families’ feeling of powerlessness.
Rituals have proven to be helpful, says Knoll. This could be about washing or painting a coffin together. It is important not to take anything away from the parents that could be helpful in overcoming the grief, emphasizes Knoll. If a child dies in the house, they are seen off with a farewell ceremony. Depending on the denomination and the wishes of the family, prayers can be said or sung. According to data from the German Children’s Hospice Association, there are 19 inpatient children’s hospices and around 170 outpatient services nationwide. This covers the need for stationary offers quite well, says managing director Marcel Globisch. This is also due to the fact that the institutions work strongly supra-regionally. A “huge problem” is currently the lack of qualified nursing staff to operate all beds.
Many children and young people would be cared for in intensive care in the houses, explained Globisch. Therefore, the nurses must have a great deal of specialist knowledge. The German Children’s Hospice Association was founded in 1990 by affected parents to give families of seriously ill children a forum for mutual exchange.
