Background: End-of-life care is a policy priority but there are no published population-level data on key outcomes, and no scientific evaluation of palliative care’s effects on those outcomes. Evidence gaps restrict policymakers in planning services and contribute to a wider lack of public knowledge on available supports near end of life.
Aims: We examine three overarching research questions (RQ) to address documented knowledge gaps for policymakers and other stakeholders in end-of-life care in Ireland:
RQ1. What are the population-level trends in death and dying?
RQ2. What is the association between local palliative care provision, and patient outcomes and costs? RQ3. What are the deficits in current routine statutory data collection?
Methods: We access data routinely collected at the population level and The Irish Longitudinal study on Ageing (TILDA), a rich, individual-level dataset (N=8,504) of adults aged over 50. For RQ1, we compile a ‘state-of-the-nation’ analysis of population-level trends using descriptive statistics and cross-tabulation to examine place and cause of death, specialist palliative care referrals, end-of-life experience in hospital, and cross-cutting regional variations.
For RQ2, we use multivariate regression to analyse cross-sectionally and difference-in-difference analysis to evaluate longitudinally. Analyses are conducted separately using population-level data and TILDA data, and will stratify effects by primary disease and multimorbidity burden.
For RQ3, we will assess critically current collection against scientific best practice in evaluating palliative care, compare Irish data collection with programmes in other countries, identify opportunities to link existing data, and propose new fields for data collection.
Impact plan: Our primary audience is the Health Service Executive National Clinical Programme in Palliative Care, who are co-applicants policymakers and have a declared interest in the results to inform provision and planning. In partnership with non-governmental knowledge-users, we circulate results to other policymakers, non- patients and carers, the general public, practitioners and researchers.