Comparing Palliative Care in Care Homes Across Europe (PACE): Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries

Lieve Van den Block, Tinne Smets, Nanja van Dop, Eddy Adang, Paula Andreasen, Danni Collingridge Moore, Yvonne Engels, Harriet Finne-Soveri, Katherine Froggatt, Giovanni Gambassi, Violetta Kijowska, Bregje Onwuteaka-Philipsen, H Roeline Pasman, Sheila Payne, Ruth Piers, Katarzyna Szczerbińska, Maud Ten Koppel, Nele Van Den Noortgate, Jenny T van der Steen, Myrra Vernooij-DassenLuc Deliens, PACE, HPJ van Hout

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OBJECTIVES: Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country 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 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward 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 3-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 (general practitioner 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 sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the 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.

Original languageEnglish
Article number566.e1-7
JournalJournal of the American Medical Directors Association
Issue number6
Publication statusPublished - 1 Jun 2016

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