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Support Care Cancer. 2019 Jul 5. doi: 10.1007/s00520-019-04956-1. [Epub ahead of print]

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.

Author information

1
Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Stratenum 6.131, PO Box 85500, 3508, GA, Utrecht, The Netherlands. J.J.M.vanDelden@umcutrecht.nl.
2
Julius Center for Health Sciences and Primary Care, University Medical Center Utrecht, Stratenum 6.131, PO Box 85500, 3508, GA, Utrecht, The Netherlands.
3
Faculty of Medicine and Health Sciences, School of Health Sciences, University of Nottingham, Nottingham, UK.
4
End-of-life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium.
5
Department of Public Health and Primary Care, Ghent University, Ghent, Belgium.
6
Department of Medical and Surgical Sciences, University of Bologna, Bologna, Italy.
7
Department of Public Health, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.
8
Department of Palliative Medicine, Bispebjerg and Frederiksberg Hospital, Research Unit, Copenhagen, Denmark.
9
Department of Psychology, University of Southern Denmark, Copenhagen, Denmark.
10
University Clinic for Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.
11
Department of Public Health, University of Copenhagen, Copenhagen, Denmark.
12
International Observatory on the End-of-Life Care, Lancaster University, Lancaster, LA1 4YG, UK.

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; Advance Directive; Cancer; Content analysis; End of life

PMID:
31278462
DOI:
10.1007/s00520-019-04956-1

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