When life ends early (WWN)

According to the Federal Association of Children’s Hospices, more than 50,000 children and young people across Germany are suffering from life-shortening illnesses, and in Berlin there are between 2,500 and 3,000 girls and boys. Their medical diagnoses are mostly very rare diseases – including one abbreviated to NCL. This stands for Neuronal Cerois Lipofuscinosis. It is a genetic metabolic disease in which a certain substance in the brain is not broken down properly. As a result, nerve cells die. At the same time, this means that abilities that have only just been learned are diminishing or disappearing completely, such as the ability to move, perceive something or the ability to think.

These children and their families need various forms of support from the day they are diagnosed. Among those who want to do this are outpatients and stationary children’s hospices. Every year on February 10th, the day of children’s hospice work draws attention to their work and the needs and hardships of the families.

Children’s hospice associations work on an outpatient and inpatient basis. The latter rather less, because the children usually should or can stay with the family, even until the last day of their lives. But that’s easier to write down than to do: the support and care up to that point has to be organised, visits to the doctor have to be managed, in health crises the child has to go to the hospital after all, and a help system has to be set up.

The work of the hospices is aimed at accompanying and supporting the whole family – often over many years. For the children’s hospice offers, the maximum age of the sick is limited to 27 years. Thanks to medical advances, many of those affected are now living longer than those who were ill in the past. This fact, which is actually pleasant, often brings new bureaucratic complications: Different social codes apply depending on age, situation and severity of illness. Parents usually have to deal with a lot of organizational effort in order to get the necessary support – or to continue to get it. You can also find contacts at the local children’s hospice providers or at the Federal Children’s Hospice Association, which has existed since 2002.

Switching support from the age of 28 to the system for adults can be difficult for a number of reasons: Young women and men are often unable to cope with daily life without assistance or the help of their relatives. The need for care can vary greatly, including artificial respiration. The severity of the disease often increases. In the beginning, the children might still be able to walk, but later they wrestle with severe disabilities, reports Sabine Sebayang. The trained pediatric nurse has been working in the hospice sector for many years, and previously she also cared for children with cancer. Today she heads the department of humanistic hospices at the Humanistic Association Berlin-Brandenburg.

On the other hand, there are clinical pictures that are not even known in adult medicine. A man who is now 40 years old is still being looked after by a pediatric cardiology department because his rare heart defect is not known to the usual cardiologists in practice.

»The difference to working with children suffering from cancer is that there is no cure for those affected. Death, dying, is always the topic,” says Sebayang, who also works on a voluntary basis on the board of the Federal Association of Children’s Hospices. This also makes it harder to find support; it is less easy to convey a positive message to this group of sufferers. Nevertheless, the individual clubs and institutions are also active towards the public. They even have to, because the payers, the statutory health insurance companies, only finance the direct support of patients and their families.

That too is always a matter of negotiation on many points. That is why the federal association also maintains a fund for non-bureaucratic emergency aid that is financed almost entirely by donations. This is used, for example, to finance technical aids that can sometimes take years to be applied for through the health insurance funds. In addition, fundraising campaigns are carried out in order to realize larger purchases for specific children, such as an outside lift or a family car that has been adapted accordingly.

The Oskar helpline is well used. “It’s there for everyone and for all topics and problems,” explains Franziska Kopitzsch, who has been the managing director of the federal association since the beginning of the year. Advice is also given on questions of social law; two lawyers support the federal association.

The focus of outpatient hospice work arises from the special situation that the sick children usually stay with their families for a long time or almost their whole life. Trained volunteers work here, but do not provide care. They accompany and support parents, the child himself or his siblings, depending on what is necessary. For the families, short recovery times are possible. The inpatient facilities also take in the children, for example, if one of the parents falls ill themselves. “All in all, it’s about getting families out of social isolation,” emphasizes Kopitzsch. This also includes offers for siblings such as children’s bereavement groups.

Politically, the federal association is fighting, among other things, for the expansion of structures for specialized outpatients palliative care. The shortage of skilled workers in medical professions is also noticeable in this area of ​​end-of-life care. The need is not even covered for adults here – teams specializing in children are a rarity. The demands also include more flexible budgets for short-term and preventive care or for the reimbursement of medical costs for assignments in inpatient children’s hospices. In order to be able to better deal with these and other concerns, the federal association opened its capital city office this week. According to the German Children’s Hospice Association, there are 19 inpatient children’s hospices and around 170 outpatient services nationwide.