Engagement of Relatives in End-of-life Care of Residents in Long-Term Care Facilities: A Cross-Sectional Study in 5 EU Countries

OBJECTIVE: To determine the extent and factors associated with relatives' engagement in end-of-life care for residents of long-term care facilities (LTCFs) during the last week before the resident's death.

DESIGN: A cross-sectional retrospective survey.

SETTING AND PARTICIPANTS: A total of 814 relatives of deceased LTCF residents in a representative sample of 229 LTCFs in Belgium, Finland, Italy, the Netherlands, and Poland.

METHODS: LTCFs reported all residents' deaths in the past 3 months. In each case, standardized questionnaires were sent to the LTCF manager, nurse, physician, and relative most involved in care. A multivariable logistic regression model was applied to assess which factors and characteristics of the relative and deceased resident were associated with more time spent with the resident in the last week of life.

RESULTS: Compared with Poland, relatives from the Netherlands [odds ratio (OR), 14.22; 95% CI, 6.56-30.82], Belgium (OR, 10.24; 95% CI 4.87-24.52), and Finland (OR, 2.57; 95% CI, 1.18-5.58) had higher odds of spending more than 14 hours with residents in the last week of life. Female relatives, who were their partners or spouses, and who provided more than 11 hours of care weekly before the resident's admission to the LTCF (OR, 2.96; 95% CI 1.55-5.65) were more likely to visit the dying resident during the last week of life. Residents placed in the LTCF due to their behavioral problems or dependency in activities of daily living (ADL) were less frequently visited by their relatives in the last week of life (OR, 0.34; 95% CI, 0.16-0.71 and OR, 0.54; 95% CI, 0.36-0.82, respectively).

CONCLUSIONS AND IMPLICATIONS: Resident's behavioral problems and dependency in ADLs at the time of admission to the LTCF were associated with their relative's lower engagement in end-of-life care. We also found substantial differences in relatives' engagement among countries. Further research is required to identify the causes of these discrepancies and to develop culture-specific support for relatives.