Abstract
BackgroundEconomic analyses of end-of-life care often focus on single aspects of care in selected cohorts leading to limited knowledge on the total level of care required to patients at their end-of-life. We aim at describing the living situation and full range of health care provided to patients at their end-of-life, including how informal care affects formal health care provision, using the case of colorectal cancer.MethodsAll colorectal cancer decedents between 2009 and 2013 in Norway (n = 7695) were linked to six national registers. The registers included information on decedents’ living situation (days at home, in short- or long-term institution or in the hospital), their total health care utilization and costs in the secondary, primary and home- and community-based care setting. The effect of informal care was assessed through marital status (never married, currently married, or previously married) using regression analyses (negative binominal, two-part models and generalized linear models), controlling for age, gender, comorbidities, education, income, time since diagnosis and year of death.ResultsThe average patient spent four months at home, while he or she spent 27 days in long-term institutions, 16 days in short-term institutions, and 21 days in the hospital. Of the total costs (~NOK 400,000), 58, 3 and 39% were from secondary carers (hospitals), primary carers (general practitioners and emergency rooms) and home- and community-based carers (home care and nursing homes), respectively. Compared to the never married, married patients spent 30 more days at home and utilized less home- and community-based care, but more health care services at the secondary and primary health care level. Their total healthcare costs were significantly lower (−NOK 65,621) than the never married. We found similar, but weaker, patterns for those who had been married previously.ConclusionEnd-of-life care is primarily provided in the secondary and home-and community-based care level, and informal caregivers have a substantial influence on formal end-of-life care provision. Excluding aspects of care such as home and community-based care or informal care in economic analyses of end-of-life care provides a biased picture of the total resources required, and might lead to inefficient resource allocations.
Highlights
Economic analyses of end-of-life care often focus on single aspects of care in selected cohorts leading to limited knowledge on the total level of care required to patients at their end-of-life
Informal caregivers are likely to influence the level of end-of-life care that people receive in the different levels of the health care sector towards their endof-life; both because the level of care that patients need depends on the patients living situation and on the informal caregivers ability to substitute formal care, in addition, the informal caregiver might ‘push the system’ to ensure that the patient receives what they perceive as sufficient amounts of care towards their end-of-life [11,12,13, 16,17,18,19]
The aim of this study was twofold; first, we wanted to describe the living situation and total health care utilization and costs at the end-of-life for an average patient dying from colorectal cancer
Summary
Economic analyses of end-of-life care often focus on single aspects of care in selected cohorts leading to limited knowledge on the total level of care required to patients at their end-of-life. Due to limited access to data, most economic research of end-oflife care utilization and costs focus on single aspects of care, often hospital care, in selected cohorts (e.g. only for the elderly) [3, 20, 21]. Cohorts can be linked at patient level to registers with information on the use and cost of health care services in all levels of the sector, and to registers with information on individual characteristics. This gives us a unique opportunity to give detailed descriptions of health care utilization and costs for non-selected cohorts of patients. We employ Norwegian register data to increase the knowledge of end-of-life care, using colorectal cancer as an example
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