title: Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe.
abstract: BACKGROUND
  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.
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Daveson
authors.affiliation: 2 CONICET and University of Buenos Aires, Buenos Aires, Argentina.
authors.forename: Juan P
authors.initials: JP
authors.lastname: Alonso
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Natalia
authors.initials: N
authors.lastname: Calanzani
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Christina
authors.initials: C
authors.lastname: Ramsenthaler
authors.affiliation: 3 Barcelona Centre for International Health Research (CRISIS - Hospital Clínic), Universitat de Barcelona, Barcelona, Spain.
authors.forename: Marjolein
authors.initials: M
authors.lastname: Gysels
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Barbara
authors.initials: B
authors.lastname: Antunes
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Katrien
authors.initials: K
authors.lastname: Moens
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Esther I
authors.initials: EI
authors.lastname: Groeneveld
authors.affiliation: 4 Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Gwenda
authors.initials: G
authors.lastname: Albers
authors.affiliation: 5 Istituto di Ricerca in Medicina Palliativa, Fondazione Lino Maestroni Fondazione ONLUS, Cremona, Italy.
authors.forename: Silvia
authors.initials: S
authors.lastname: Finetti
authors.affiliation: 5 Istituto di Ricerca in Medicina Palliativa, Fondazione Lino Maestroni Fondazione ONLUS, Cremona, Italy.
authors.forename: Francesca
authors.initials: F
authors.lastname: Pettenati
authors.affiliation: 6 Interdisciplinary Centre for Palliative Medicine, Munich University Hospital, Munich, Germany1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Harding
authors.affiliation: 7 End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium.
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
authors.affiliation: 5 Istituto di Ricerca in Medicina Palliativa, Fondazione Lino Maestroni Fondazione ONLUS, Cremona, Italy.
authors.forename: Franco
authors.initials: F
authors.lastname: Toscani
authors.affiliation: 8 Faculty of Economics, Centre for Health Studies and Research (CEISUC), University of Coimbra.
authors.forename: Pedro L
authors.initials: PL
authors.lastname: Ferreira
authors.affiliation: 9 University Antwerp, Antwerp, Belgium.
authors.forename: Lucas
authors.initials: L
authors.lastname: Ceulemans
authors.affiliation: 1 King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, UK.
authors.forename: Barbara
authors.initials: B
authors.lastname: Gomes
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D005060:Europe; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008297:Male; D008875:Middle Aged; D011639:Public Opinion; D058996:Quality Improvement; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000592:standards; D055815:Young Adult