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.
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.
| Original language | English |
|---|---|
| Pages (from-to) | 101-110 |
| Number of pages | 10 |
| Journal | Palliative Medicine |
| Volume | 28 |
| Issue number | 2 |
| Early online date | 23 May 2013 |
| DOIs | |
| Publication status | Published - 2 Feb 2014 |
Bibliographical note
Acknowledgements: We are most grateful to all the survey participants. We thank the European Commission for providing the financial support needed to undertake this study; BMG Research and ZEM University of Bonn for assistance in survey administration and data collection and Joana Cadima for statistical advice. We also thank our colleagues from PRISMA including the scientific committee who contributed to the discussions and scientific review of the survey, namely, Gwenda Albers, Barbara Antunes, Ana Barros Pinto, Dorothee Bechinger-English, Hamid Benalia, Emma Bennett, Lucy Bradley, Noël Derycke, Martine de Vlieger, Let Dillen, Julia Downing, Michael Echteld, Natalie Evans, Dagny Faksvåg Haugen, Nancy Gikaara, Sue Hall, Stein Kaasa, Jonathan Koffman, Arantza Meñaca, Johan Menten, Fliss Murtagh, Bregje Onwuteaka-Philipsen, Roeline Pasman, Francesca Pettenati, Robert Pool, Richard A. Powell, Miel Ribbe, Katrin Sigurdardottir, Bart Van den Eynden, Paul Vanden Berghe and Trudie van Iersel. We thank Susana Bento, Carolina Comabella, Filomena Ferreira, Grethe Iversen, Carmen López-Dóriga, Constanze Rémi, Christian Schulz and Wessex Translations for their work in translating and back translating the questionnaires. The invaluable work of Ron Irwin, Sian Best and Mike Gover at King’s College London is also highly appreciated.This survey was undertaken as part of one of the work packages of PRISMA. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aimed to reflect the preferences and cultural diversities of citizens and the clinical priorities of clinicians and appropriately measure multidimensional outcomes across settings where EoLC is delivered. Principal Investigator: Richard Harding. Scientific Director: Irene J Higginson.
Funding: This work was supported by the European Commission’s Seventh Framework Programme (grant number Health-F2-2008-201655) as part of the PRISMA project to co-ordinate research into EoLC in cancer.
Declaration of Conflicting Interests: The authors declare that there is no conflict of interest.
