The diagnosis of a life-shortening disease is still a taboo subject. Children and youth suffering from life-threatening illness have no chance of recovery due to their illness. The mere thought of this reality is unbearable, but, even worse, how helpless parents and other family members must feel when they know without a doubt that their children or siblings will not reach adulthood.
Through our cooperation with the DHZB and discussions with those affected, I have learned that many still fear to come into contact with children who have incurable diseases. In Germany alone there are about 40,000 children and adolescents who are so seriously ill that they will not live to become adults. Some live with their disease for several years, others months, still others only for a few days.
Therefore, children’s hospice work is tremendously important with its inpatient and clinic services as well as helpline telephones. The hospice staff work with the whole family to provide concrete support for parents and sibling children. This care includes not only helping the family to meet the daily medical needs of their sick child at home but also to provide respite care and recreational opportunities for the parents, children and siblings. Staff support continues even after the death of a child, providing companionship and counseling for the affected families in their grief.
After visiting patients in a children’s hospice and discussing matters with the Federal Association for Children’s Hospice e.V., I quickly realized that our foundation could provide much needed assistance. For the training of staff as well as the upkeep and improvement of facilities can not be financed solely by health and long-term care insurance funds. Children’s hospices are dependent on donations and numerous volunteers.