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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

Research output: Contribution to journalJournal article

E-pub ahead of print
  • M Zwakman
  • Johannes J. M. van Delden
  • Glenys Caswell
  • Luc Deliens
  • Francesca Ingravallo
  • Lea jabbarian
  • Anna Johnsoen
  • Ida J Korfage
  • A Mimić
  • Caroline Arnfeldt
  • Nancy Preston
  • M Kars
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<mark>Journal publication date</mark>5/07/2019
<mark>Journal</mark>Supportive Care in Cancer
Issue number3
Volume28
Number of pages10
Pages (from-to)1513–1522
Publication statusE-pub ahead of print
Early online date5/07/19
Original languageEnglish

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.