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Autonomy and control in the wish to die in terminally ill patients: A systematic integrative review

Published online by Cambridge University Press:  07 July 2021

Andrea Rodríguez-Prat Open the ORCID record for Andrea Rodríguez-Prat [Opens in a new window] ,
Donna M. Wilson Open the ORCID record for Donna M. Wilson [Opens in a new window]  and
Remei Agulles
Andrea Rodríguez-Prat*
Affiliation:
Faculty of Humanities, Universitat Internacional de Catalunya, Barcelona, Spain School of Medicine and Health Sciences, Universitat Internacional de Catalunya, Barcelona, Spain
Donna M. Wilson
Affiliation:
Faculty of Nursing, University of Alberta, Edmonton, AB, CanadaT6G 1C9
Remei Agulles
Affiliation:
Faculty of Humanities, Universitat Internacional de Catalunya, Barcelona, Spain
*
Author for correspondence: Andrea Rodríguez-Prat, Faculty of Humanities, School of Medicine and Health Sciences, Universitat Internacional de Catalunya, Josep Trueta s/n, 08195 Sant Cugat del Vallès, Barcelona, Spain. E-mail: [email protected]
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Abstract

Background/Objective

Personal autonomy and control are major concepts for people with life-limiting conditions. Patients who express a wish to die (WTD) are often thought of wanting it because of loss of autonomy or control. The research conducted so far has not focused on personal beliefs and perspectives; and little is known about patients’ understanding of autonomy and control in this context. The aim of this review was to analyze what role autonomy and control may play in relation to the WTD expressed by people with life-limiting conditions.

Methods

A systematic integrative review was conducted. The search strategy used MeSH terms in combination with free-text searching of the EBSCO Discovery Service (which provides access to multiple academic library literature databases, including PubMed and CINAHL), as well as the large PsycINFO, Scopus, and Web of Science library literature databases from their inception until February 2019. The search was updated to January 2021.

Results

After the screening process, 85 full texts were included for the final analysis. Twenty-seven studies, recording the experiences of 1,824 participants, were identified. The studies were conducted in Australia (n = 5), Canada (n = 5), USA (n = 5), The Netherlands (n = 3), Spain (n = 2), Sweden (n = 2), Switzerland (n = 2), Finland (n = 1), Germany (n = 1), and the UK (n = 1). Three themes were identified: (1) the presence of autonomy for the WTD, (2) the different ways in which autonomy is conceptualized, and (3) the socio-cultural context of research participants.

Significance of results

Despite the importance given to the concept of autonomy in the WTD discourse, only a few empirical studies have focused on personal interests. Comprehending the context is crucial because personal understandings of autonomy are shaped by socio-cultural–ethical backgrounds and these impact personal WTD attitudes.

Keywords

AutonomyControlDesire to diePalliative careSystematic review
Type
Review Article
Information
Palliative & Supportive Care , Volume 19 , Issue 6 , December 2021 , pp. 759 - 766
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Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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