Who needs, receives and misses out on palliative and end-of-life care? A population-based study to identify needs and gaps in a regional health service

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Abstract
Objective: The aim of this study was to assess the unmet need for palliative and other end-of-life care, as well as the sociodemographic and diagnostic factors associated with suboptimal access, among residents in an Australian region. Methods: A cross-sectional descriptive and analytical study was performed using non-identifiable linked data from four administrative and two clinical datasets. The study population comprised 3175 patients aged =15 years who died in hospital in 2016 and 2017. The main outcome measures were the proportion of decedents potentially benefitting from end-of-life care and receiving end-of-life care. Results: An estimated 74.8% of decedents needed palliative or other end-of-life care in the year before death. Approximately 13.3% did not receive any end-of-life care despite its potential benefit. The highest proportions with ‘unmet need’ were decedents with chronic obstructive pulmonary disease (31.0%) and heart failure (26.3%). Adjusting for sociodemographic and diagnostic factors, access was lowest among those aged <65 years (adjusted odds ratio (aOR) 0.44; 95% confidence interval (CI) 0.31–0.64) and those with heart failure (aOR 0.58; 95% CI 0.47–0.72). Conclusions: Estimates of need and access provide a sound basis for planning local palliative and end-of-life care services. These methods can be used on an ongoing basis to monitor service delivery. What is known about this topic?: There is a small but expanding literature on estimating the need for palliative care at a population level. There is a lack of data regarding access to palliative and other end-of-life care across multiple settings (e.g. home, specialist palliative care unit, hospital) and patient groups (e.g. defined by sociodemographics and diagnostics). What does this paper add?: The study builds on previously used methods for estimating the need for palliative care, with some refinements, including the addition of ‘other clinical indications’ and the use of weights to derive more realistic estimates. The estimates of need are consistent with recent estimates from Australia and overseas, whereas the estimates of access are similar to a recent Australian estimate, but higher than estimates from overseas. The gaps in access are highest among those with the major types of chronic organ failure, particularly heart and respiratory. What are the implications for practitioners?: The study demonstrates how routinely collected data at a regional level can be used to estimate need and access to palliative and end-of-life care, in the hospital and in the community. These methods of estimating need and unmet need can be used to inform the planning and development of services, as well as to monitor progress with implementation of changes in service provision.

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