Actual and preferred place of death of home-dwelling patients in four European countries: making sense of quality indicators.
BACKGROUND
Dying at home and dying at the preferred place of death are advocated to be desirable outcomes of palliative care. More insight is needed in their usefulness as quality indicators. Our objective is to describe whether "the percentage of patients dying at home" and "the percentage of patients who died in their place of preference" are feasible and informative quality indicators.


RESULTS
A mortality follow-back study was conducted, based on data recorded by representative GP networks regarding home-dwelling patients who died non-suddenly in Belgium (n = 1036), The Netherlands (n = 512), Italy (n = 1639) or Spain (n = 565). "The percentage of patients dying at home" ranged between 35.3% (Belgium) and 50.6% (The Netherlands) in the four countries, while "the percentage of patients dying at their preferred place of death" ranged between 67.8% (Italy) and 86.0% (Spain). Both indicators were strongly associated with palliative care provision by the GP (odds ratios of 1.55-13.23 and 2.30-6.63, respectively). The quality indicator concerning the preferred place of death offers a broader view than the indicator concerning home deaths, as it takes into account all preferences met in all locations. However, GPs did not know the preferences for place of death in 39.6% (The Netherlands) to 70.3% (Italy), whereas the actual place of death was known in almost all cases.


CONCLUSIONS
GPs know their patients' actual place of death, making the percentage of home deaths a feasible indicator for collection by GPs. However, patients' preferred place of death was often unknown to the GP. We therefore recommend using information from relatives as long as information from GPs on the preferred place of death is lacking. Timely communication about the place where patients want to be cared for at the end of life remains a challenge for GPs.
Department of Public and Occupational Health, Expertise Center of Palliative Care, VU University medical center, EMGO Institute for Health and Care Research, Amsterdam, the Netherlands.
Maaike L
ML
De Roo
Clinical and Descriptive Epidemiology Unit, Cancer Prevention and Research Institute (L'Istituto per lo Studio e la Prevenzione Oncologica, ISPO), Florence, Italy.
Guido
G
Miccinesi
Department of Public and Occupational Health, Expertise Center of Palliative Care, VU University medical center, EMGO Institute for Health and Care Research, Amsterdam, the Netherlands.
Bregje D
BD
Onwuteaka-Philipsen
Department of Geriatrics, Ghent University Hospital, Ghent, Belgium.
Nele
N
Van Den Noortgate
End-of-life Care Research Group Vrije Universiteit Brussel (VUB) and Ghent University, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
Lieve
L
Van den Block
Clinical and Descriptive Epidemiology Unit, Cancer Prevention and Research Institute (L'Istituto per lo Studio e la Prevenzione Oncologica, ISPO), Florence, Italy.
Andrea
A
Bonacchi
NIVEL, Netherlands Institute for Health Services Research, Utrecht, the Netherlands.
Gé A
GA
Donker
Public Health Directorate General, Regional Ministry of Health, Government of Castilla y León, Valladolid, Spain.
Jose E
JE
Lozano Alonso
Health Services Research, Scientific Institute of Public Health, Public Health and Surveillance (WIV-ISP, Wetenschappelijk Instituut Volksgezondheid, Institut Scientifique de Santé Publique), Brussels, Belgium.
Sarah
S
Moreels
Department of Public and Occupational Health, Expertise Center of Palliative Care, VU University medical center, EMGO Institute for Health and Care Research, Amsterdam, the Netherlands; End-of-life Care Research Group Vrije Universiteit Brussel (VUB) and Ghent University, Vrije Universiteit Brussel (VUB), Brussels, Belgium.
Luc
L
Deliens
Department of Public and Occupational Health, Expertise Center of Palliative Care, VU University medical center, EMGO Institute for Health and Care Research, Amsterdam, the Netherlands; NIVEL, Netherlands Institute for Health Services Research, Utrecht, the Netherlands.
Anneke L
AL
Francke
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001293:Attitude to Death; D001530:Belgium; D003657:Decision Making; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D009426:Netherlands; D010166:Palliative Care / Q000706:statistics & numerical data; D019984:Quality Indicators, Health Care / Q000706:statistics & numerical data; D013030:Spain; D013727:Terminal Care / Q000706:statistics & numerical data; D055815:Young Adult