Care trajectories and planning at the end-of-life: Evidence from international studies of ageing

Abstract

Objective: End-of-life care is an increasingly important topic on the healthcare agenda of many countries around the world. Current demographic trends indicate increasing demand for end-of-life care, as longevity and increased multi-morbidity is becoming more common. Many people at the end-of-life do not receive the desired care leading to suboptimal outcomes and healthcare budget inefficiencies. Design: Observational cohort study design. Setting: The United States, using data from the HRS (9,228 participants who died between 2002 to 2014 and 37,494 individuals surveyed biennially from 1992 to 2014); England, using the ELSA data (992 participants who died between 2004 to 2013); and 16 European countries and Israel, using data from the SHARE (5,343 participants who died between 2006 and 2013). Measurements: Logistic regression analysis was applied to examine the determinants of the place of death. Random-effects logistic regression analysis was used to examine the determinants of end-of-life planning. Finally, logistic regression analyses were employed to examine the racial and ethnic differences in the place of death, intensity of end-of-life care and the availability and the content of the end-of-life instructions. Results: End-of-life care and planning varies substantially across different territories and population groups. The financing mechanism of end-of-life care and patient characteristics such as age, terminal illness, cohabitation status and racial and ethnic background are important determinants of end-of-life care. Conclusions: Public support is needed to facilitate equitable access to institutional and formal out-of-hospital end-of-life care services. Increasing choice and lowering the cost burden of end-of-life care will enable individuals to receive the patient-centred care and reduce dependency on acute terminal care. Advance care planning is an integral part of good-quality end-of-life care. Attitudes to end-of-life care and planning vary across different patient groups. Understanding and respecting these differences is needed to increase the end-of-life planning participation and improve delivery of good-quality end-of-life care.