Children and Youth with Multiple Disabilities: Participation and Palliative Care

UN convention on the rights of persons with disabilities (CRPD) and UN convention on the rights of the Child (CRC) form the framework to explain rights and needs of children and youth with multiple disabilities. However, societal constraints and the restrictions of functioning itself limit development, participation and activity of this group. In addition, progressive medical complications of elsewise stationary impairments lead to earlier death. This justifies the classification of severe disabilities as a live-limiting condition (ACT group 4). Families and esp. parents are put under a long-lasting burden to cope with all aspects of their disabled child, and often chronic stress, exhaustion and depression take place. Over time the perspective of parents may change. The wish do “all that is possible” is replaced by the wish to stay at home with the disabled child, to avoid ward admissions and painful medical interventions, and to focus quality of life. The paradigmatic transition from curative medicine (including emergency medicine, intensive care, and reanimation) to palliative care addressing quality of life, restrictions of medical interventions and assurance of home care can best be prepared by early integration of palliative thinking of the medical staff and contact to palliative care teams.