Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States

Abstract

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs. Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Participants: Informal carers of decedents who had received palliative care participated in the study. Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

“… Median Mean s.d. Informal care costs I Informal care costs II* England 36,170 31,104 31,192 22,132 22,527 13,254 15,756 15,036 69.7% 58.4% Ireland 43,760 36,930 36,398 26,767 25,477 18,604 29,210 24,231 60.0% 47.8% USA 32,468 28,578 28,847 19,973 19,679 12,521 37,327 37,234 46.5% 34.9% All countries 37,802 32,956 32,185 23,160 22,998 14,163 27,452 28,203 57.9% 45.8% *Informal care cost II excludes the cost of “time spent ‘being on call’” $ Formal care costs were calculated by combining resource use data with unit costs obtained from standard as explained in [ 19 ] …”

“… *Informal care cost II excludes the cost of “time spent ‘being on call’” $ Formal care costs were calculated by combining resource use data with unit costs obtained from standard as explained in [ 19 ] …”

“…Participating palliative care services in London (England), Dublin (Ireland), New York and San Francisco (USA) were as follows: established hospital palliative care consulting teams in all countries, a hospital-based community outreach team in London and an inpatient palliative care ward in New York. Details of the participating services are found elsewhere [ 19 , 23 , 24 ].…”

“…Informal time spent caring was counted with the Client Service Receipt Inventory (CSRI) [ 19 , 23 ], by asking respondents to document all IC time spent by family and friends as well as the respondents during the last 3 months of the patient’s life. Six questions covered a wide range of possible physical, social, emotional and other caring activities, including time spent ‘on call’ and being available for the patient (Additional file 1 : Table S1).…”

“…Formal care costs were extracted from an earlier analysis on this dataset and are presented to aid interpretation. These were calculated by multiplying the quantity of specific services used according to the CSRI with corresponding country-specific unit costs [ 19 ].…”