Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe

BARBARA DAVESON; JUAN PEDRO ALONSO; NATALIA CALANZANI; CHRISTINA RAMSENTHALER; OTROS

EUROPEAN JOURNAL OF PUBLIC HEALTH

OXFORD UNIV PRESS

Lugar: Oxford; Año: 2014 vol. 24 p. 521 - 527

1101-1262

Background: Many European countries lack national policies regarding palliative and end-of-life care. This is concerning in light of the urgent need to respond to our ageing populations, and increasing cancer deaths. In order to inform national and international policy, the aim of our research was to determine the public?s views and preferences on how they would like to be cared for in the face of serious illness at the end of life. Methods: Implementation of a pan-European population-based survey with adults in: England, Belgium, Germany, Italy, Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: 1) inductive analysis to determine a category-code framework; 2) country-level manifest deductive content analysis; 3) thematic analysis to identify cross-country prominent themes.Results: Of the 9,344 respondents, 1,543 (17%) answered the open-ended question. Two prominent themes were revealed: 1) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families; 2) 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: The public recognise the importance of death and dying. There is concern regarding the prioritisation of quantity of life over quality of life, patient autonomy, comfort, support and dignity. Within Europe the call for improved quality of end-of-life and palliative care for patients, especially elderly patients, and families persists. An acceptable balance between quality and quantity of life needs to be achieved. In order to fulfil the urgent need for a policy response and to advance research and care, four solutions are outlined 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.