Evidence map›Paper›PMID 40380168›Full record

ArticleBMC palliative care2025

"It's my life, it's my choice and I want to say when" vs "A good death is to be on good terms with God". Comparing the views of people with dementia in the UK and Brazil about a good death: a cross-cultural qualitative study.

Rasa Mikelyte, Karen Harrison Dening, Déborah Oliveira, Julia Maria Vanelli, Adriele Ferreira Neves, Natashe Lemos Dekker, Francelise Pivetta Roque, Edison Iglesias de Oliveira Vida

Abstract read
In one paragraph

Article in BMC palliative care, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Review
  3. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Rasa MikelyteResearch Fellow, Centre for Health Services Studies, University of Kent, Canterbury, UK.ORCID http://orcid.org/0000-0002-2772-8240
Karen Harrison DeningHead of Research and Publications, Dementia UK, London, England.ORCID http://orcid.org/0000-0001-7635-644X
Déborah OliveiraResearcher and Lecturer, Department of Psychiatry, Federal University of São Paulo, São Paulo, Brazil.ORCID http://orcid.org/0000-0002-6616-533X
Julia Maria VanelliInternal Medicine Department, Medical School Botucatu, São Paulo State University (UNESP), Botucatu, Brazil.ORCID http://orcid.org/0000-0002-8591-9424
Adriele Ferreira NevesNeurology, Psychiatry, and Psychology Department, Medical School Botucatu, São Paulo State University (UNESP), Botucatu, Brazil.ORCID http://orcid.org/0000-0002-0156-6984
Natashe Lemos DekkerPostdoctoral Researcher, Department of Anthropology, University of Amsterdam, Amsterdam, The Netherlands.ORCID http://orcid.org/0000-0001-5523-4523
Francelise Pivetta RoqueAssociate Professor, Speech and Language Therapy Department, Nova Friburgo Health Institute, Universidade Federal Fluminense, Nova Friburgo, Brazil.ORCID http://orcid.org/0000-0002-0998-8014
Edison Iglesias de Oliveira VidaProfessor, Internal Medicine Department, Medical School Botucatu, São Paulo State University (UNESP), Av. Mario Rubens Guimaraes Montenegro, SN, Botucatu, SP, 18618-687, Brazil. edison.vidal@unesp.br.ORCID http://orcid.org/0000-0002-1573-4678

Funding

Conselho Nacional de Desenvolvimento Científico e Tecnológico 312499/2022-1Fundação de Amparo à Pesquisa do Estado de São Paulo 2019/18129-6Fundação de Amparo à Pesquisa do Estado de São Paulo 2019/18583-9
6 · The paper itself

Abstract

backgroundIt is unclear what People Living with Dementia (PLwD) consider a good death to entail, or how those perspectives vary according to culture and context. We aimed to compare the meaning of a good death for PLwD in Brazil and in the United Kingdom (UK).

methodsIn this cross-sectional qualitative study, we conducted semi-structured interviews with a convenience sample of 32 PLwD (16 in Brazil and 16 in the UK) using jointly designed, equivalent interview guides. Two teams of interdisciplinary researchers independently analysed transcripts for their country using inductive thematic analysis, followed by jointly developing overarching themes on the contrasts and similarities across both settings.

resultsWe identified three shared themes: choice and control; spirituality; and fears and wishes. Choice and control permeated all aspects of what a good death meant to PLwD in the UK but was largely absent from Brazilian narratives. The opposite was true for spirituality, which was central to the meaning of a good death in Brazil, while far less prominent in the UK. In both countries, previous experiences with the death of others often shaped wishes and fears towards their own deaths.

conclusionOur results have potential to expand the awareness and sensitivity of health and social care professionals around different cultural views on what a good death means for PLwD and what helps or hinders achieving it. Additionally, our findings challenge global indices of quality of death that do not take cultural and contextual differences into account.

Indexed as

Attitude to DeathChoice BehaviorDementiaAgedAged, 80 and overBrazilCross-Cultural ComparisonCross-Sectional StudiesFemaleHumansInterviews as TopicMaleMiddle AgedQualitative ResearchSpiritualityUnited KingdomCross-cultural comparisonsDeathDementiaPalliative careQualitative research

Identifiers

PMID40380168
PMCPMC12082953

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.