Patient perspectives of dignity, autonomy and control at the end of life: systematic review and meta-ethnography

Abstract

Background: Research in the end-of-life context has explored the sense of dignity experienced by patients with advanced disease, examining the factors associated with it. Whereas certain perspectives regard dignity as an intrinsic quality, independent of external factors, in the clinical setting it is generally equated with the person’s sense of autonomy and control, and it appears to be related to patients’ quality of life. This study aims to explore the relationship between perceived dignity, autonomy and sense of control in patients at the end of life.

Methods: We conducted a systematic review and meta-ethnography using reciprocal translation and line-of-argument synthesis. The search strategy used MeSH terms in combination with free-text searching of the Pubmed, Web of Science, CINAHL, PsycINFO and Cochrane databases, from their inception until 2015. This identified 186 articles, after excluding duplicates. The inclusion criterion was primary qualitative studies in which dignity, autonomy and control at the end of life were explored. Studies were evaluated using the CASP guidelines.

Results: Twenty-one studies recording the experiences of 400 participants were identified. Three themes emerged: a) dignity mediated by the loss of functionality, linked to the loss of control; b) dignity as identity; and c) autonomy as a determining factor of perceived dignity, understood as the desire for control over the dying process and the desire for self-determination. We propose an explanatory model which highlights that those patients with an intrinsic sense of dignity maintained a positive view of themselves in the face of their illness.

Conclusion: This synthesis illustrates how dignity and autonomy are intertwined and can be perceived as a multidimensional concept, one that is close to the notion of personal identity. The ability to regard dignity as an intrinsic quality has a positive impact on patients, and the design of care strategies should take this into account.