Learning from the public: Citizens describe the need to improve end-of-life care access, provision and recognition across Europe

B.A. Daveson, J.P. Alonso, N. Calanzani, C. Ramsenthaler, M. Gysels, B. Antunes, K. Moens, E.I. Groeneveld, G. Albers, S. Finetti, F. Pettenati, C. Bausewein, I.J. Higginson, Richard Harding, L. Deliens, F. Toscani, P.L. Ferreira, L. Ceulemans, B. Gomes

Research output: Contribution to journalArticlepeer-review

14 Citations (Scopus)

Abstract

Despite ageing populations and increasing cancer deaths, many European countries lack national
policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding
end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based
survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three
stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a
category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to
identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the
open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and
palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death
and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include
comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying;
they are concerned about the prioritization of quantity of life over quality of life; and they call for improved
quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the
urgent need for a policy response and to advance research and care, we suggest four solutions for European
palliative and end-of-life care: institute government-led national strategies; protect regional research funding;
consider within- and between-country variance; establish standards for training, education and service delivery.
Original languageEnglish
Pages (from-to)521-527
Number of pages7
JournalEuropean Journal of Public Health
Volume24
Issue number3
DOIs
Publication statusPublished - 1 Jun 2014

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