In 2017 there was an estimated 21 million children with noncommunicable and communicable diseases that could benefit from palliative care. In Germany alone there are around 50 000 children, adolescents and young adults suffering from such diseases.
The majority of conditions are distinct from those in adult palliative care. Children are more resilient and more likely to require child palliative care for longer periods than adults. However, most child health efforts are aimed at reducing mortality, and little attention has been paid to the need for child palliative care.
Families go through unbearable suffering, worsened by the lack of information on child palliative care. They urgently need support. Unfortunately, there are no reliable figures. The Atlas of Palliative Care first included figures for volunteering and pediatric hospitals in 2019. Comparative figures pertaining to affected children are not yet available.
One of the solutions put forward by civil society in Germany is to develop hospital facilities for children throughout Europe to alleviate the distress of affected families and to accompany and support them. This initiative will be an opportunity to gather information on such projects across Europe. The Parliamentary Assembly should highlight these examples, put forward recommendations to the Committee of Ministers and ensure that they are followed by the European Health Committee (CDSP).
Families need to be supported through networks of families living the same experience. The Assembly should stress the role of family associations as support systems for parents and children facing this painful experience.