Provision of end-of-life care in North America takes place across a multitude of settings, including hospitals, ambulatory clinics and home settings. As a result, family caregiving is characteristically a major component of care within the home. Accordingly, economic evaluation of the end-of-life care environment must devote equal consideration to resources provided by the public health system as well as privately financed resources, such as time and money provided by family caregivers. This paper addresses the methods used to measure end-of-life care costs. The existing empirical literature will be reviewed in order to assess care costs with areas neglected in this body of literature to be identified. The Ambulatory and Home Care Record, a framework and tool for comprehensively measuring costs related to the provision and receipt of end-of-life care across all health care settings, will be described and proposed. Finally, areas for future work will be identified, along with their potential contribution to this body of knowledge. 1. Introduction Health care restructuring in North America has resulted in an increased emphasis on ambulatory and home-based end-of-life care [1]. Home-based healthcare services are characterized by limited resources and escalating healthcare costs. In some areas, publicly financed home-based end-of-life programs have been established to provide community care and team-based multidisciplinary care to individuals at home. While the home environment is often the first choice for patients and family members, home-based care may place higher demands on family members, particularly when a patient has complex and immediate health care needs and is close to death. Although a high proportion of home-based end-of-life care is provided by family caregivers, little empirical attention has been devoted to the identification and measurement of the full range of costs incurred by patients and their caregivers. Most economic analyses of home-based care are limited to measurement of publicly financed care. Despite the fact that a high proportion of end-of-life care is provided by family caregivers, particularly in the home setting, time spent by these caregivers is often perceived as having no or minimal monetary value [2]. Time allocations to care, if not provided by family caregivers, may have necessitated the acquisition of a privately funded caregiver. Measuring only health system costs, whether publicly or privately financed, may therefore lead to an inaccurate estimate of relative resource costs associated with alternative health care
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