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Young Adults with Life-Limiting Diseases Left Without Specialized Hospice Care

Thousands of young adults face a broken system as their complex diseases outgrow pediatric care—but adult hospices aren't equipped to help. One foundation is fighting to change that.

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The image shows a poster with a child's face in the center, surrounded by text that reads "Every...
The image shows a poster with a child's face in the center, surrounded by text that reads "Every day lives are saved by blood donors". The child has a solemn expression, with their eyes looking directly at the viewer, conveying a sense of sadness and despair. The text is written in bold, black font, emphasizing the importance of the message.

Children's Hospice Sees Care Gaps for Young Adults - Young Adults with Life-Limiting Diseases Left Without Specialized Hospice Care

February 10 marks Children's Hospice Care Day, a campaign launched in 2006 by the German Children's Hospice Association. The day highlights a growing concern: many young adults with serious illnesses are falling through gaps in the current hospice system. Experts warn that specialised care for this group remains severely lacking across Germany.

Each year, around 5,000 children, adolescents, and young adults in Germany succumb to diseases that drastically shorten their lives. Advances in medicine mean more young people now survive conditions that were once fatal in childhood. Yet, as they grow older, they face a new challenge—few specialised outpatient palliative care (SAPV) teams have expertise in their complex needs.

In Berlin alone, an estimated 10,000 to 11,000 young people live with life-limiting diseases. Many wish to live independently but still require ongoing support. However, adult SAPV teams often lack experience with paediatric and adolescent diseases, such as neuromuscular diseases like spinal muscular atrophy or neurodegenerative disorders like neuronal ceroid lipofuscinosis. No official figures exist on how many SAPV teams nationwide specialise in these diseases.

The Björn Schulz Foundation, which supports around 1,000 families annually with counselling, outpatient care, and grief support, is now exploring a new project. The initiative aims to bridge the gap in specialised outpatient services for young adults with severe diseases.

The need for tailored palliative care for young adults is becoming more urgent. Without targeted support, many continue to struggle with inadequate services. The Björn Schulz Foundation's proposed project could offer a critical step toward addressing this unmet need.

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