Consensus on treatment for residents in long-term care facilities: Perspectives from relatives and care staff in the PACE cross-sectional study in 6 European countries

M. ten Koppel, H. R. W. Pasman, J. T. van der Steen, H. P. J. van Hout, M. Kylänen, L. van den Block, T. Smets, L. Deliens, G. Gambassi, K. Froggatt, K. Szczerbińska, B. D. Onwuteaka-Philipsen, Zeger de Groote, Lara Pivodic, Federica Mammarella, Martina Mercuri, Mariska Oosterveld-Vlug, Agnieszka Pac, Paola Rossi, Ivan SegatEleanor Sowerby, Agata Stodolska, Anne Wichmann, Eddy Adang, Paula Andreasen, Harriet Finne-Soveri, Sheila Payne, Danni Collingridge Moore, Violetta Kijowska, Nele van den Noortgate, Myrra Vernooij-Dassen

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Background: In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives. Methods: In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus. Results: Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland). Conclusions: In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus.
Original languageEnglish
Article number73
JournalBMC palliative care
Issue number1
Publication statusPublished - 29 Aug 2019

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