Filling the Final Days With Laughter

Norbert Neubauer's son Niklaus suffers from a rare genetic disorder called "mucopolysaccharidosis" or MPS. Usually, this condition results in various genetic deformities such as skeletal deformities, mental retardation, and decreased life expectancy.

When Norbert's son was diagnosed 8 years ago, he says, "At that time there was just nowhere to turn, we were in this situation and we felt completely alone. When we did finally did find out about child hospice care…we really had to struggle to get accepted."

The Neubauer's dilemma is unfortunately typical of an already painful and distressing situation. In Germany every year approximately 3,000 parents are given a diagnosis confirming that their child will soon die or have a dramatically shortened life span.

Such was the reasoning behind a conference that took place in Cologne on October 14-15. The event, called the Erste Deutsche Kinderhospiztage, or "First German Child Hospice Days" was a gathering of child hospice workers, managers and lobbyists that are collectively trying to erase the taboo surrounding death and children and create new services for German families.

A unique challenge

Children living with terminal illnesses provide a unique and particularly difficult challenge for families and healthcare providers. Children are not "little adults". And solutions for children living in the shadow of death cannot be simply extrapolated from adult hospice programs. End-of-life care for children must not only manage the physical symptoms of the child, but address social and psychological demands of the whole family.

Margret Hartkopf, is a board member of the Child Hospice Association of Germany, and herself a mother of a terminally ill child. "It's such a difficult situation, the parents feel guilty that they can't heal their child, and the physical and emotional burden of constantly attending to a sick child can be overwhelming for the entire family."

According to Hartkopf, hospice care is, "meant to be flexible, the services are there to help the families, provide medical care, counselling and also educate others. For instance, grandparents, social workers--even teachers have contacted us saying, 'a child in my class has died and I feel helpless…what do I do?'"

Need for inpatient and outpatient services

Germany currently maintains five stationary child hospice clinics compared to 26 in England, three in Canada and one in the United States.

The German Child Hospice movement was launched in 1990 by a group of parents living in the Sauerland Region. The first children's hospice clinic in Germany was opened in 1998 in the town of Ople. "At first we had to overcome the enormous stereotype the hospices were 'death houses', or that hospices were related only to cancer," explains Dr. Franco Rest, Director of the Dietrich-Oppenberg Hospice Academy in Essen.

Children's hospice's are meant to be small, with a capacity of about 8 children; more like staying with family and friends rather than a hospital. According to federal statistics, there are estimated to be some 22,000 children in Germany that are in need of hospice care. Given this limited capacity the demand for new services and trained staff is enormous.

Lots of living to do

The sad reality about children stricken with debilitating and life-shortening illness is that as other children become more and more independent, they become more dependent. Within this grim calculus the parents are the ones the children turn to.

As Germany rushes to create more inpatient and outpatient hospice services for children and families, and also grapple with the complex emotions at the core of the issue, it's extremely important to remember that the point of this care is to help the child live life not prepare for death.

"They want to be taken seriously," explains Hartkopf. "They ask questions and they expect answers. They want friends, they want to laugh and they want to take part in public life."