Background: In the last years, the structure of Pediatric Palliative Care in Germany has developed more and more. Since 2007, there is a legal claim for a specialized palliative care in German which also applies to children. Therefore, the need of an advance care planning for children is frequently discussed. In Germany, a written advance is judicially approved only when the person concerned is of full age, intentions to change this legal ground are going on. Nevertheless in many institutions involved in pediatric palliative care standard forms similar to an advance patient directive are used, especially since 2009 when a Do-Not-Resuscitate-Order (DNR-Order) equivalent for children was published on which many German pediatric medical societies had agreed.
Methods: To get an overview which DNR-Order equivalents are actually used in pediatric palliative care in Germany we sent a questionnaire with 10 items to 174 institutions that are involved in pediatric oncological palliative care between August 2012 and October 2013.
Results: Only 46.9% of replying institutions used the DNR-Order equivalent for children approved by many German pediatric societies. When asked for optimizing such an advance patient directive for minors it was mostly suggested to include always a protocol of the consenting talk, an individualized treatment algorithm of all therapeutic options (not only emergency measures) in the palliative setting, and a more detailed information about the patient's current palliative situation.
Conclusions: All collected data were summarized within a suggestion for a new advance pediatric oncological care planning standard form for minors in Germany.
Keywords: Do-Not-Resuscitate-Order (DNR-Order); palliative care medicine; pediatric.