Palliative and end-of-life care data in Ireland (PELCI)

The Dying and Death in Ireland report presents findings from the first phase of the PELCI project. The report shows that cancer and heart-related disease are the leading causes of death in Ireland. In 2018, 31% of people died of cancer and 29% of heart-related conditions. Diseases of the respiratory system were the third most common cause of death (13%). The study also found an increase in deaths due to mental and behavioural disorders between 2013 and 2018. This increase was driven by higher rates of deaths due to dementia over that time.  The study also found that hospitals were the most common place where people died between 2013 and 2018 in Ireland. Over 2 in 5 (44%) people died in our hospitals each year, followed by deaths at home (23%) and deaths in long stay residential care (23%). A further 8% of people died in specialist inpatient palliative units (hospices).

A difference-in-differences evaluation of hospital care, part of the PELCI project’s second aim, shows that prompt interaction between suitable patients and palliative care can improve the quality and efficiency of care to this population. Many patients receive palliative care later in the hospital stay, which does not yield cost-savings. To strengthen the evidence, this study recommends that future research identify areas where new palliative care services have been introduced and ensure these areas have high-quality individual patient data.

For our third aim investigating deficits in current statutory data collection our study found significant heterogeneity in the Palliative and End-of-Life Care data infrastructure of high-income countries. Predominantly data capture focuses on specialist palliative care services, not primary and community care. Some high-income countries have developed bespoke palliative care databases; others link existing data sources using unique identifiers.