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Title:Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention : insights gained from the ACTION trial
Authors:Zwakman, Marieke (Author)
Delden, Johannes JM van (Author)
Caswell, Glenys (Author)
Deliens, Luc (Author)
Ingravallo, F. (Author)
Jabbarian, Lea J. (Author)
Johnsen, Anna Thit (Author)
Korfage, Ida Joanna (Author)
Mimič, Alenka (Author)
Møller Arnfeldt, C. (Author)
Lunder, Urška (Author)
Červ, Branka (Author)
Simonič, Anja (Author)
Kodba Čeh, Hana (Author)
Ozbič, Polona (Author)
Tipology:1.01 - Original Scientific Article
Organisation:Logo UKPBAG - University Clinic of Respiratory and Allergic Diseases Golnik
Abstract:Purpose. Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods. A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results. In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care. Conclusions. My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients.
Keywords:advance care planning, psycho-oncology, medical oncology, ACTION study, cancer, end of life, dying persons
Year of publishing:2019
Publisher:Springer Nature
COBISS_ID:51449091 Link is opened in a new window
ISSN on article:1433-7339
OceCobissID:513740569 Link is opened in a new window
DOI:10.1007/s00520-019-04956-1 Link is opened in a new window
Note:Nasl. z nasl. zaslona; Soavtorice iz Slovenije: A. Mimić, U. Lunder, B. Červ, A. Simonič, H. Kodba Čeh, P. Ozbič; Opis vira z dne 12. 2. 2021;
Files:.pdf PDF - Presentation file, download (351,21 KB)
.zip ZIP - Supplement, download (1,80 MB)
URL URL - Source URL, visit
Journal:Support. care cancer
Rights:(c) The Author(s) 2019
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License:CC BY 4.0, Creative Commons Attribution 4.0 International
Description:This is the standard Creative Commons license that gives others maximum freedom to do what they want with the work as long as they credit the author.
Licensing start date:05.09.2019