Dying in long-term care facilities in Europe : The PACE epidemiological study of deceased residents in six countries

Honinx, Elisabeth and Van Dop, Nanja and Smets, Tinne and Deliens, Luc and Van Den Noortgate, Nele and Froggatt, Katherine and Gambassi, Giovanni and Kylänen, Marika and Onwuteaka-Philipsen, Bregje and Szczerbińska, Katarzyna and Van Den Block, Lieve and Gatsolaeva, Yuliana and Miranda, Rose and Pivodic, Lara and Tanghe, Marc and Van Hout, Hein and Pasman, Roeline H.R.W. and Oosterveld-Vlug, Mariska and Piers, Ruth and Wichmann, Anne B. and Engels, Yvonne and Vernooij-Dassen, Myrra and Hockley, Jo and Payne, Sheila and Leppäaho, Suvi and Barańska, Ilona and Pautex, Sophie and Bassal, Catherine and Mammarella, Federica and Mercuri, Martina and Rossi, Paola and Segat, Ivan and Stodolska, Agata and Adang, Eddy and Andreasen, Paula and Kuitunen-Kaija, Outi and Moore, Danni Collingridge and Pac, Agnieszka and Kijowska, Violetta and Ten Koppel, Maud and Van Der Steen, Jenny T. and De Paula, Emilie Morgan (2019) Dying in long-term care facilities in Europe : The PACE epidemiological study of deceased residents in six countries. BMC Public Health, 19 (1): 1199. ISSN 1471-2458

Abstract

Background: By 2030, 30% of the European population will be aged 60 or over and those aged 80 and above will be the fastest growing cohort. An increasing number of people will die at an advanced age with multiple chronic diseases. In Europe at present, between 12 and 38% of the oldest people die in a long-term care facility. The lack of nationally representative empirical data, either demographic or clinical, about people who die in long-term care facilities makes appropriate policy responses more difficult. Additionally, there is a lack of comparable cross-country data; the opportunity to compare and contrast data internationally would allow for a better understanding of both common issues and country-specific challenges and could help generate hypotheses about different options regarding policy, health care organization and provision. The objectives of this study are to describe the demographic, facility stay and clinical characteristics of residents dying in long-term care facilities and the differences between countries. Methods: Epidemiological study (2015) in a proportionally stratified random sample of 322 facilities in Belgium, Finland, Italy, the Netherlands, Poland and England. The final sample included 1384 deceased residents. The sampled facilities received a letter introducing the project and asking for voluntary participation. Facility manager, nursing staff member and treating physician completed structured questionnaires for all deaths in the preceding 3 months. Results: Of 1384 residents the average age at death ranged from 81 (Poland) to 87 (Belgium, England) (p < 0.001) and length of stay from 6 months (Poland, Italy) to 2 years (Belgium) (p < 0.05); 47% (the Netherlands) to 74% (Italy) had more than two morbidities and 60% (England) to 83% (Finland) dementia, with a significant difference between countries (p < 0.001). Italy and Poland had the highest percentages with poor functional and cognitive status 1 month before death (BANS-S score of 21.8 and 21.9 respectively). Clinical complications occurred often during the final month (51.9% England, 66.4% Finland and Poland). Conclusions: The population dying in long-term care facilities is complex, displaying multiple diseases with cognitive and functional impairment and high levels of dementia. We recommend future policy should include integration of high-quality palliative and dementia care.