Objectives
While a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Crosscountry representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare six countries in terms of 1) resident outcomes, quality and costs of palliative and end-of-life care; 2) palliative care structures and staff
knowledge and attitudes towards palliative care. We also aim to explore country, facility, staff, patient and care characteristics related to better outcomes at resident level.
Design and Methods
To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous three-month period. For each case, structured questionnaires including validated instruments are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (GP or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care
homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and socio-demographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes.
Conclusion
Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence-base that can inform the development of policies to target improved palliative care in care homes. By describing this
research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes.
This is the author’s version of a work that was accepted for publication in Journal of the American Medical Directors Association. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Journal of the American Medical Directors Association, 17, 6, 2016 DOI: 10.1016/j.jamda.2016.03.008
