Burden on family carers and difficulties in covering costs of care at the end of life: a cross-national, population-based study via representative GP networks

Background: Given a growing number of people with long disease trajectories and a preference for home death, need for family care is expected to increase. However, population-based data on the prevalence of burden in family carers of people at the end of life and of care-related financial burden are scarce.

Objectives: To describe and compare, with respect to patients at the end of life in Belgium, the Netherlands, Italy and Spain, the number and associated factors of family carers feeling overburdened and of families with difficulty in covering costs of care.
Design and methods: Cross-national retrospective study. In 2009 and 2010, representative GP networks weekly registered every non-sudden death among their patients (?18 years) using a standardised form surveying the patient's last three months of life including carers' burden. Analysis involved descriptive statistics, ?2-tests and multiple logistic regression analyses.

Results: We studied 4,466 deaths. For 28% (Belgium), 30% (Netherlands), 35% (Spain) and 71% (Italy) GPs judged that carers felt overburdened (p
Conclusions: In all countries studied, and particularly in Italy, GPs observe overburdened family carers and difficulties in covering costs of end-of-life care. Carers of patients at home and carers of younger patients may be at particular risk of burden. This should be considered particularly when advocating a shift in end-of-life care from institutions to home.