Innocent pain

In the past few days the Day of Hospices for Children was celebrated in Germany. The event is aimed at raising public awareness on this issue and spread information on the work of Germany’s Hospice Association, founded in 1990 by six families with incurable children. The first hospice for children was founded in 1998 in Olpe in the Saarland region, with the cooperation of Franciscan nuns. Since then, eight hospices for children were set up in Germany, while four are planned to be established soon. In January the first hospice for the youth was inaugurated in Olpe. There also are 61 outpatient hospices for children that are located across the Country. For the past five years in Würzburg, Bavaria, Malteser Hilfsdienst (the First-aid body of the German Association of the Sovereign Order of Malta) has been providing assistance in the hospices. Follow the personal accounts of workers operating in this field, conveyed by the diocese of Würzburg.Priority: to help. “While, thanks God, a number of initiatives for children with cancer and for their families do exist, often the families with children affected by disabilities or by other serious diseases are not taken into consideration. But these children and their parents are in great need of help and assistance”, declared Martina Mirus, volunteer coordinator of Malteser Dienst centre for hospice services. In September 2003, the Malteser centre of Würzburg set up an assistance service for children and youth in the diocese’ hospices. The Centre was the first in Bavaria to extend volunteer work to this sector. Paediatricians, social and pastoral workers, directors of self-help structures and groups jointly developed this service. The Malteser workers provide assistance to home bedridden children, to the centre for physically disabled patients in Heuchelhof and to the Institute for the blind. Training for volunteer work. Volunteer work in the hospices usually begins by attending a number of courses held the evenings and weekends, followed by apprenticeship. In this framework, sharing experiences of the loss of one’s dear ones and looking into one’s own death is extremely significant. “Only after having confronted my weaknesses and fears can I fully devote myself to the dying person. The lack of such personal elaboration risks having negative effects on one’s activity”, said Georg Bischof, hospice activity coordinator. Six training levels integrate the training of those who wish to do volunteer work in the hospices for children. “Relating to children”, “high mortality-rate child diseases”, “and child death” are some of the specific issues addressed. “Children and young incurable or terminally-ill patients need targeted assistance. This is at the centre of our volunteer work, along with assistance to relatives”, Mirus explained. “Each one of them necessitates the same amount of attention, assistance and personalised care. Families with terminally ill children experience a range of different feelings: from anger to impotence, from courage to desperation. We want to be close to them”. Sharing pain. Hospice volunteer workers pay visits to the families, listen to their pain and try to provide consolation. “We grant them our support, we keep them company, sometimes even by remaining silent and enabling them to let out their feelings. But we also set limits for ourselves”, said Brigitte Gehlofen, volunteer worker. “This aspect is crucial in our work. As soon as I realise that I perceive my own pain I seek for help. This is the role of the supervisor. I know that I can turn to this person in a confidential environment and share my feelings with someone who has experience in this field”. Volunteer workers meet once a month to share their reflections: it’s an indispensable moment, according to Gerold Weiß-Engert: “I must always be critical with myself. I entered the realm of suffering but I must not view myself responsible. On the other hand, it makes me happy when I can accompany someone for a long time. Depression is useless. I must say yes to death, however painful this may be. Our teachers are those who leave us”. Complete freedom. Malteser’s volunteer service centre envisages the possibility for volunteer workers to interrupt their activity. “It often happens that volunteers take a few months’ break”, Mirus said. “It’s a self-motivated thrust”. There are regular meetings with the supervisor, attended also by those who request a period of leave, so they may continue their relationship with the group. It’s important that the voluntary aspect of this service is preserved”, she pointed out. “In this way we grant everyone the freedom to decide for how long they want to work. Also patients realize that volunteer workers are motivated by free choice, since they don’t view it as a job”.