BackgroundAchieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death.MethodsWe recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors.ResultsOne hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40–9.90) and living with someone (OR 2.19, 1.33–3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14–5.03). Conversely, functional independence (OR 1.05, 1.04–1.06) and valuing quality of life (OR 3.11, 2.89–3.36) were associated with dying at home. There was a mismatch between preferences and achievements – of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference.ConclusionAlthough home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply ‘achieved preferences’.Electronic supplementary materialThe online version of this article (10.1186/s12877-017-0648-4) contains supplementary material, which is available to authorized users.
In May 2017, an Irish cross-party parliamentary committee published the 'Houses of the Oireachtas Committee on the Future of Healthcare "Sláintecare" report'. The report, known as 'Sláintecare', is unique and historic as it is the first time there has been a cross-party political consensus on major health reform in Ireland. Sláintecare sets out a high level policy roadmap to deliver whole system reform and universal healthcare, phased over a ten year period and costed. Sláintecare details reform proposals which, if delivered, will establish; a universal, single-tier health service where patients are treated solely on the basis of health need; the reorientation of the health system 'towards integrated primary and community care, consistent with the highest quality of patient safety in as short a time-frame as possible'. Sláintecare has five interrelated components: population health; entitlements and access to healthcare; integrated care; funding; and implementation. In this article, the authors use documents in the public domain (parliamentary reports, public hearings, submissions to the Committee, media coverage, the final report of the Committee, speeches by Committee members) to describe the policy process and the main contents of the proposed Sláintecare reforms. It is too soon tell if the political consensus in the policy formation can hold for its implementation.
Costs in the last year of life for patients in receipt of specialist palliative care are considerable. Where inpatient hospice care is available, there are potential savings in hospital costs to offset specialist palliative care inpatient costs. Informal care accounts for a high proportion of costs during the last year of life in each area, underlining the important role of informal caregivers in palliative care.
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.
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