Priorities for treatment, care and information if faced with serious illness: A comparative population-based survey in seven European countries

Author:

Higginson Irene J1,Gomes Barbara1,Calanzani Natalia1,Gao Wei1,Bausewein Claudia12,Daveson Barbara A1,Deliens Luc345,Ferreira Pedro L6,Toscani Franco7,Gysels Marjolein8,Ceulemans Lucas9,Simon Steffen T1011,Cohen Joachim45,Harding Richard1,

Affiliation:

1. King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK

2. Interdisciplinary Centre for Palliative Medicine, Munich University Hospital, Munich, Germany

3. EMGO Institute for Health and Care Research, Palliative Care Center of Expertise and Department of Public and Occupational Health, VU University Medical Center, Amsterdam, the Netherlands

4. End-of-Life Care Research Group, Ghent University, Ghent, Belgium

5. End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium

6. Centre for Health Studies and Research, University of Coimbra (CEISUC), Coimbra, Portugal

7. Istituto di Ricerca in Medicina Palliativa, Fondazione Lino Maestroni – ONLUS, Cremona, Italy

8. Barcelona Centre for International Health Research (CRESIB – Hospital Clínic), Universitat de Barcelona, Barcelona, Spain

9. Campus Drie Eiken, University of Antwerp, Antwerp, Belgium

10. Center for Palliative Medicine and Center for Integrative Oncology (CIO), University Hospital Cologne, Cologne, Germany

11. Institute of Palliative Care (ipac), Oldenburg, Germany

Abstract

Background: Health-care costs are growing, with little population-based data about people’s priorities for end-of-life care, to guide service development and aid discussions. Aim: We examined variations in people’s priorities for treatment, care and information across seven European countries. Design: Telephone survey of a random sample of households; we asked respondents their priorities if ‘faced with a serious illness, like cancer, with limited time to live’ and used multivariable logistic regressions to identify associated factors. Setting/participants: Members of the general public aged ≥16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Results: In total, 9344 individuals were interviewed. Most people chose ‘improve quality of life for the time they had left’, ranging from 57% (95% confidence interval: 55%–60%, Italy) to 81% (95% confidence interval: 79%–83%, Spain). Only 2% (95% confidence interval: 1%–3%, England) to 6% (95% confidence interval: 4%–7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%–17%, Spain) to 40% (95% confidence interval: 37%–43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities. Conclusions: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.

Publisher

SAGE Publications

Subject

Anesthesiology and Pain Medicine,General Medicine

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