Palliative care – when children die

Christiane Fux studied journalism and psychology in Hamburg. The experienced medical editor has been writing magazine articles, news and factual texts on all conceivable health issues since 2001. In addition to her work for NetDoktor, Christiane Fux also works in prose. Her first crime novel appeared in 2012, and she also writes, designs and publishes her own crime games.

Children who only have a short time to live usually want to spend their last days at home. This is often possible medically, but the necessary support is lacking.

When a child dies, the world stops for the family – be it death from an accident, illness or death birth comes. The German Children’s Hospice Association estimates that around 22,000 children are currently living in Germany with life-threatening conditions. Around 5,000 of them die each year, according to the Munich Children’s Palliative Care Center. Leukemia, severe metabolic disorders, heart defects: after such a diagnosis, everything turns upside down, nothing is the way it was. Not for the sick children, not for the parents, just as little for siblings and other relatives.

Life in a state of emergency

For months, sometimes years, life moves between hope and despair. For families, this often means constant commuting between the clinic and home. In addition, everyday life, caring for the siblings and one’s own job must be organized. The nervous tension wears out many families because they live a life in a permanent state of emergency.

"More life in the day"

When the last hope for a cure disappears in the course of a life-threatening illness, it is time to rethink. "Therapy target change", that’s what it means in official jargon. Expressed differently: "It is no longer a matter of giving life more days, but more days of life", says Dr. Boris Zernikow, head of the Institute for Pediatric Palliative Medicine in Datteln. Often this works best in a familiar environment, what also Can greatly relieve parents and children.

Every piece of normalcy is good for the children, experts are convinced. Being back home gives them security and security that they urgently need. Depending on the type and severity of the disease, some children may also be better protected under the protection of the clinic because all medical options are available there.

Breaking children’s souls

Siblings also benefit when the sick brother or sister comes home. "Many siblings feel unloved because everything is about the sick child. At the same time, they feel guilty about their jealousy", reports Dr. Monika Führer, senior physician at the Hauners Children’s Hospital in Munich. School failure, bedwetting and other Behavioral problems are alarm signals for a breaking child’s soul.

If the sick child is cared for at home, the siblings are no longer outside. You can participate, take on small love services and give happy moments. Katja Kuhlmann, a pediatric nurse at a Munich children’s nursing service, talks in a NetDoktor conversation about a small patient who was particularly dear to her: "When her three-year-old sister came into the room, she always smiled – until the end."


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