Hospiz- und Palliativeinrichtungen in Österreich

Die Saat geht langsam auf – Miteinander bewegt für schwerkranke Kinder und Jugendliche

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Rund 200 TeilnehmerInnen, über 50 ReferentInnen, und sogar Babys, ein Pony, ein Pferd und ein Therapiehund bevölkerten am 13. und 14. Juni 2019 das Bildungszentrum St. Virgil und die umgebende Grünfläche bei strahlendem Wetter. Anlass war der 2. Pädiatrische Hospiz- und Palliativkongress in Österreich unter dem Motto „Miteinander bewegt“.

Auftakt bildeten die Grußworte des Hausherrn Jakob Reichenberger. Waltraud Klasnic, Vorsitzende des Dachverbandes Hospiz Österreich, führte im Namen der Mitveranstalter Österreichische Gesellschaft für Jugendheilkunde, Österreichische Palliativgesellschaft und Universitätslehrgang Palliative Care mit dem Lehrgang Palliative Care in der Pädiatrie heiter in den Kongress ein. Sie betonte, dass sich seit dem ersten Kongress 2016 bei den Angeboten sehr viel weiterentwickelt hat und noch viel zu tun ist, besonders im Blick auf die nach wie vor fehlende Regelfinanzierung. „Alle Kinder haben dieselbe Würde und denselben Wert, ob sie gesund oder schwerkrank sind. Danke, dass Sie sich tagtäglich für diese Kinder und Jugendlichen, deren Eltern und Geschwister einsetzen, sie begleiten und betreuen!“

Große Wertschätzung drückte auch der Salzburger Landeshauptmann-Stellvertreter Mag. Dr. Christian Stöckl in seinen Grußworten aus und verwies auf die zwei großen Herausforderungen in der Finanzierung: Die Pflege und die Umsetzung des regionalen Strukturplan Gesundheit inklusive Hospiz- und Palliativbereich. Mag. Karl Schwaiger, Obmann der Hospizbewegung Salzburg, rief erfreut die bereits bestehenden Salzburger Einrichtungen im Kinderbereich, das Mobile Kinder-Palliativteam Papageno mit zwei Teams, das Kinder-Hospizteam in Erinnerung und erwähnte das erste Tageshospiz für Erwachsene im ländlichen Raum, das im Pinzgau in Planung ist.

Anschließend stellte Simone Strobl den Verein Pusteblume vor. Berührt und bewegt erfuhren alle Anwesenden von der Initiative, die FotografInnen zusammenführt mit Eltern, deren Kinder tot geboren werden oder bald nach der Geburt sterben. Diese Bilder, wertvolle Erinnerungen, sind für die Eltern kostenfrei. „Wir fotografieren nicht den Tod. Wir fotografieren sehnlichst erwartetes Leben.“, so Simone Strobl. Am Kongress gab es eine Ausstellung der äußerst sensiblen ersten und letzten Bilder dieser Kinder.

Quirliges Leben brachte der Kinderchor superar, dessen Motto „Music for social change“ ist.

Julia Downing, Geschäftsführerin des weltweiten Kinderpalliativnetzwerks icpcn und in Uganda und Großbritannien gleicherweise zu Hause, brachte den ersten inhaltlichen Vortrag am Kongress.  In wunderbarer Weise weitete sie den Blick auf die ganze Welt. Sie hob hervor, dass es weltweit auch in der Hospiz- und Palliativbetreuung für Kinder um Leben geht, um Lebensqualität, Freude bis zuletzt, um eine Betreuung von Körper, Seele, Herz, um die Sorge um die Familien und Geschwister. Man schätzt, dass weltweit über 21 Mio. Kinder Hospiz- und Palliativbetreuung brauchen und ca. 7 Mio. davon end of life care, ein großer Teil davon betrifft perinatale Palliative Care. 50% dieser Kinder leben in Afrika. Fünf Felder wies Downing auf, an denen gearbeitet werden muss: Politik/Richtlinien, Zugang zu Medikamenten, Bildung, Umsetzung von konkreten und effektiven Maßnahmen (Welches Modell von Hospiz und Palliative Care kann die jeweiligen Bedürfnisse am besten erfüllen?), mehr Forschung.

International blieben auch die nächsten vier Beiträge: eine kurze Darstellung der aktuellen Situation von Hospiz und Palliative Care in der Pädiatrie in Österreich (Leena Pelttari, Claudia Nemeth), Deutschland (Silke Nolte-Buchholtz), der Schweiz (Jürg Streuli) und Südtirol (Ulrike Piccolruaz).

Nach diesem umfassenden Einstieg und ersten Vormittag, den Martina Kronberger-Vollnhofer moderierte, fächerte sich der Kongress in seine vielfältigen Themen, Vorträge, Workshops auf.

Das Abendprogramm brachte eine schwungvolle und kulinarische Note: eine überaus lebendige Vorführung des Kinderzirkus Circus Anthelli und dann – zu den beschwingten Klängen des Trio Negro – das Grillbuffet im Garten des Bildungszentrums.

Unter den vielen spannenden Themen möchten wir eines herausgreifen, da es, wie es eine Teilnehmerin formulierte, zum ersten Mal mutig und explizit in einer Öffentlichkeit besprochen worden sei. In „Neue Therapien – Leben um jeden Preis?“ wurde schwierigen Themen Raum gegeben, die sich im neonatologischen und pädiatrischen Bereich immer wieder stellen: Wie viel noch tun, mit welchem Aufwand und Kosten auf allen Seiten? Wann etwas lassen? Was heißt es, das Kindeswohl in den Mittelpunkt zu stellen und nicht das Machbare? Wie kommuniziert man mit den Familien? Unter der Moderation von Dietmar Weixler, Palliativmediziner und Notfallmediziner in Horn, tauschten sich ExpertInnen zu verschiedenen Aspekten aus und versuchten, gangbare Weg aufzuzeigen: Mit neuen Therapien in der Neonatologie – Herausforderungen und Grenzen beschäftigte sich Angelika Berger  aus Wien. Hochpreisige Medikamente in der Pädiatrie – der Balanceakt in der Verordnung und Verabreichung war das Thema von Reinhold Kerbl aus Leoben/Stmk. Im Mittelpunkt das Kindeswohl und dennoch relativ – wie geht das? fragte Reinhard Klaushofer  aus Salzburg

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. Ethisch reflektiert entscheiden im Spannungsfeld zwischen Kindeswohl und Kindeswillen beschäftigte Hans-Walter Ruckenbauer aus Graz.

Der Kongress war ein voller Erfolg und das Netzwerken in Österreich und mit Gästen aus dem Ausland konnte in der wunderschönen Umgebung des Bildungszentrums St. Virgil besonders gut gelingen.

Wir bedanken uns sehr herzlich für die Unterstützung bei der Bundesministerin für Frauen, Familien und Jugend im Bundeskanzleramt, dem Land und der Stadt Salzburg, der Wiener Städtischen Versicherung und der Universität Salzburg, Österreichisches Institut für Menschenrechte!

Das genaue Programm finden Sie hier: Programmheft als pdf

Unsere Pressemeldung zum Kongress

Eine Nachlese, die laufend ergänzt wird, finden Sie unter: www.kinderhospiz-kongress.at

Fotos ©: Maria Schwarzmann, St Virgil; Christof Eisl, Dachverband Hospiz Österreich