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Umso wichtiger ist es, neben der Initiierung von Therapien wie Perkutane endoskopische Gastrostomie (PEG), nichtinvasiver Beatmungstherapie (NIBT), invasiver Beatmungstherapie mit Tracheotomie (IBT), beizeiten \u00fcber die m\u00f6gliche Beendigung dieser Ma\u00dfnahmen zu sprechen.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Fragestellung<\/jats:title>\n                    <jats:p>Welche Bedeutung haben Patientenverf\u00fcgungen f\u00fcr die Betroffenen und wo liegen eventuelle Defizite der Therapieplanung f\u00fcr das Lebensende?<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Material und Methode<\/jats:title>\n                    <jats:p>An sechs Behandlungszentren wurden im Zeitraum zwischen M\u00e4rz 2017 und Januar 2019 Patienten mit der klinisch sicheren Diagnose ALS gebeten, einen Fragebogen auszuf\u00fcllen. Insgesamt haben 328 Personen diese B\u00f6gen ausgef\u00fcllt zur\u00fcckgegeben.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ergebnisse<\/jats:title>\n                    <jats:p>Insgesamt 72\u202f% der Befragten besa\u00dfen eine Patientenverf\u00fcgung (PV), 25\u202f% planten eine solche auszuf\u00fcllen, lediglich 3\u202f% lehnten dies ab. Beim Verfassen der PV hatten die meisten Patienten (90\u202f%) Unterst\u00fctzung erhalten, bei 56\u202f% fand jedoch keine \u00e4rztliche Beratung statt und lediglich 18\u202f% hatten ihre Verf\u00fcgung gemeinsam mit Arzt und Angeh\u00f6rigen erstellt, wobei sich die Mehrzahl eine Unterst\u00fctzung auch durch einen Arzt gew\u00fcnscht h\u00e4tte. 37\u202f% aller Patienten w\u00fcnschten sich einen Ansprechpartner, um \u00fcber ihre Erkrankung zu sprechen, lediglich 40\u202f% von diesen hatten einen solchen Ansprechpartner. 22\u202f% aller Patienten gaben an, einen Suizid erwogen zu haben. Von diesen gaben 55\u202f% an, keinen Ansprechpartner f\u00fcr die psychische Belastung durch die Erkrankung zu haben; 31\u202f% gaben aber an, dass sie gerne einen Ansprechpartner h\u00e4tten.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Diskussion und Schlussfolgerung<\/jats:title>\n                    <jats:p>Eine koordinierte Versorgung von ALS-Patienten, die auch die psychosozialen Aspekte in den Blick nimmt, ist dringend erforderlich.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s00115-024-01769-4","type":"journal-article","created":{"date-parts":[[2024,11,15]],"date-time":"2024-11-15T06:17:55Z","timestamp":1731651475000},"page":"1131-1138","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":4,"title":["Perspektiven auf das Lebensende: eine systematische Erhebung bei Patienten mit amyotropher Lateralsklerose","End of life perspectives: a\u00a0systematic survey of patients with amyotrophic lateral sclerosis"],"prefix":"10.1007","volume":"95","author":[{"given":"Clemens","family":"Eickhoff","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bettina","family":"Sch\u00f6ne-Seifert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dagmar","family":"Kettemann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eike","family":"Bormann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Torsten","family":"Grehl","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthias","family":"Boentert","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jan C.","family":"Koch","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carolina","family":"Schmitt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bertold","family":"Schrank","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carsten","family":"Schr\u00f6ter","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Meyer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,11,15]]},"reference":[{"key":"1769_CR1","doi-asserted-by":"publisher","first-page":"1613","DOI":"10.1055\/a-1562-7882","volume":"146","author":"T Meyer","year":"2021","unstructured":"Meyer\u00a0T (2021) Amyotrophe Lateralsklerose (ALS) \u2013 Diagnose, Verlauf und neue Behandlungsoptionen. 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