Does informal care impact utilisation of home-based formal care services among end-of-life patients? A decade of evidence from Ontario, Canada.

Abstract

Understanding how informal care impacts formal care utilisation for home-based end-of-life patients is an important policy- and practice-relevant question. This paper aims to assess the relationship between informal and formal home care among home-based end-of-life patients and how this relationship has changed over the last decade and over the end-of-life trajectory. We focus on informal care provided by family members or friends, and three types of home-based formal care services: care by personal support workers, physician visits, and nurse visits. Using survey data collected in a home-based end-of-life care programme in Ontario, Canada from 2005 to 2016, we build a two-part utilisation model analysing both the propensity to use each type of formal care and the amount of formal care received by patients. The results suggest that informal care is a substitute for care by personal support workers, but a complement to physician visits and nurse visits. In the case of nurse visits, an increased complementary effect is observed in more recent years. For home-based physician and nurse visits, the complementary effect grows with patient's proximity to death. These results highlight the complexity of the relationship between informal and formal care among home-based end-of-life patients. Decision-makers need to take into account the relationship between informal care and different types of formal services when introducing future policies.