Autonomy and control in the wish to die in terminally ill patients: A systematic integrative review
- 7 July 2021
- journal article
- review article
- Published by Cambridge University Press (CUP) in Palliative & Supportive Care
- Vol. 19 (6), 759-766
- https://doi.org/10.1017/s1478951521000985
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
This publication has 70 references indexed in Scilit:
- End-of-life medical decisions in France: a death certificate follow-up survey 5 years after the 2005 act of parliament on patients’ rights and end of lifeBMC Palliative Care, 2012
- Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate surveyBMC Public Health, 2012
- What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of PatientsPLOS ONE, 2012
- Dying cancer patients’ own opinions on euthanasia: An expression of autonomy? A qualitative studyPalliative Medicine, 2011
- The wish to hasten death: a review of clinical studiesPsycho‐Oncology, 2010
- Using qualitative metasummary to synthesize qualitative and quantitative descriptive findingsResearch in Nursing & Health, 2007
- What people close to death say about euthanasia and assisted suicide: a qualitative studyJournal of Medical Ethics, 2006
- Views on Physician-Assisted Suicide Among Family Members of Oregon Cancer PatientsJournal of Pain and Symptom Management, 2006
- Patient Control and End-of-Life Care Part II: The Patient PerspectiveOncology Nursing Forum, 2004