Diversity in defining end of life care: an obstacle or the way forward?

<h4>Aim</h4>The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and...

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Autores principales:	Marjolein Gysels, Natalie Evans, Arantza Meñaca, Irene J Higginson, Richard Harding, Robert Pool, Project PRISMA
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2013
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/e2ae043500c442c58f85b4cf731b0561
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spelling	oai:doaj.org-article:e2ae043500c442c58f85b4cf731b05612021-11-18T07:38:46ZDiversity in defining end of life care: an obstacle or the way forward?1932-620310.1371/journal.pone.0068002https://doaj.org/article/e2ae043500c442c58f85b4cf731b05612013-01-01T00:00:00Zhttps://www.ncbi.nlm.nih.gov/pmc/articles/pmid/23844145/?tool=EBIhttps://doaj.org/toc/1932-6203<h4>Aim</h4>The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to understand its current usage and meanings.<h4>Method</h4>A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to experts in the field identified through the literature, European EoL care associations, and conferences targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis.<h4>Results</h4>Responses were received from 167 individuals (33% response rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice and only 14% offered a standard definition (WHO, or local institution). 2% said that the concept of EoL care was not used in their country, and 5% said that there was opposition to the concept for religious or cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively by drawing boundaries through setting time frames, and inclusively by approaching its scope in an integrative way. This led to reflections about terminology and whether defining EoL care is desirable.<h4>Conclusion</h4>The global expansion of EoL care contributes to the variety of interpretations of what it means. This complicates the endeavour of defining the field. However, when diversity is taken seriously it can open up new perspectives to underpin the ethical framework of EoL care.Marjolein GyselsNatalie EvansArantza MeñacaIrene J HigginsonRichard HardingRobert PoolProject PRISMAPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 8, Iss 7, p e68002 (2013)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Marjolein Gysels Natalie Evans Arantza Meñaca Irene J Higginson Richard Harding Robert Pool Project PRISMA Diversity in defining end of life care: an obstacle or the way forward?
description	<h4>Aim</h4>The terms used to describe care at the end of life (EoL), and its definitions, have evolved over time and reflect the changes in meaning the concept has undergone as the field develops. We explore the remit of EoL care as defined by experts in EoL care, from across Europe and beyond, to understand its current usage and meanings.<h4>Method</h4>A qualitative survey attached to a call for expertise on cultural issues in EoL care was sent to experts in the field identified through the literature, European EoL care associations, and conferences targeted at EoL care professionals. Respondents were asked to identify further contacts for snowball recruitment.The responses were analysed using content and discourse analysis.<h4>Results</h4>Responses were received from 167 individuals (33% response rate), mainly from academics (39%) and clinical practitioners working in an academic context (23%) from 19 countries in Europe and beyond. 29% of respondents said explicitly that there was no agreed definition of EoL care in practice and only 14% offered a standard definition (WHO, or local institution). 2% said that the concept of EoL care was not used in their country, and 5% said that there was opposition to the concept for religious or cultural reasons. Two approaches were identified to arrive at an understanding of EoL care: exclusively by drawing boundaries through setting time frames, and inclusively by approaching its scope in an integrative way. This led to reflections about terminology and whether defining EoL care is desirable.<h4>Conclusion</h4>The global expansion of EoL care contributes to the variety of interpretations of what it means. This complicates the endeavour of defining the field. However, when diversity is taken seriously it can open up new perspectives to underpin the ethical framework of EoL care.
format	article
author	Marjolein Gysels Natalie Evans Arantza Meñaca Irene J Higginson Richard Harding Robert Pool Project PRISMA
author_facet	Marjolein Gysels Natalie Evans Arantza Meñaca Irene J Higginson Richard Harding Robert Pool Project PRISMA
author_sort	Marjolein Gysels
title	Diversity in defining end of life care: an obstacle or the way forward?
title_short	Diversity in defining end of life care: an obstacle or the way forward?
title_full	Diversity in defining end of life care: an obstacle or the way forward?
title_fullStr	Diversity in defining end of life care: an obstacle or the way forward?
title_full_unstemmed	Diversity in defining end of life care: an obstacle or the way forward?
title_sort	diversity in defining end of life care: an obstacle or the way forward?
publisher	Public Library of Science (PLoS)
publishDate	2013
url	https://doaj.org/article/e2ae043500c442c58f85b4cf731b0561
work_keys_str_mv	AT marjoleingysels diversityindefiningendoflifecareanobstacleorthewayforward AT natalieevans diversityindefiningendoflifecareanobstacleorthewayforward AT arantzamenaca diversityindefiningendoflifecareanobstacleorthewayforward AT irenejhigginson diversityindefiningendoflifecareanobstacleorthewayforward AT richardharding diversityindefiningendoflifecareanobstacleorthewayforward AT robertpool diversityindefiningendoflifecareanobstacleorthewayforward AT projectprisma diversityindefiningendoflifecareanobstacleorthewayforward
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Diversity in defining end of life care: an obstacle or the way forward?

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