Project

More people are living longer, increasing the need for expert care of complex medical illness. The end-of-life phase can impose severe physical and psychological burden on people with terminal illness and their families. Contemporary health systems are not geared to providing good end-of-life care. Palliative care aims to maximise quality of remaining life. Current availability of palliative care in Ireland depends heavily on which area of the country you live in. Improving palliative and end-of-life care requires good data on current practices. However, we currently know little about the end-of-life phase in Ireland: where people die, what health care they use, how family and friends provide unpaid care, and how palliative care shapes these experiences. This project aims to improve knowledge and understanding of these questions.

We will access data from multiple government bodies on how people die. We will also use The Irish Longitudinal Study on Ageing (TILDA), which since 2009 interviews a nationally representative cohort of people aged over 50 on their life experience, health and health care use. We will combine data to describe national trends in death and dying; to measure differences in palliative care service by region; and to evaluate how local palliative care provision is associated with important indicators of end-of-life experience, e.g. pain, anxiety, death in preferred place. We will also compare the data currently collected by Department of Health and Health Service Executive against practices in other countries, to identify opportunities for improvement.

Our results will improve provision and planning in palliative and end-of-life care by providing for the first time a national picture of how people die in Ireland, by quantifying how palliative care impacts these experiences, and by identifying ways in which services can be better evaluated and provided in future.

This project is compiling the first ‘state of the nation’ analysis of palliative and end-of-life care in Ireland.

Aims
We aim to address three overarching research questions:
     1.  What are the population trends in death and dying?
     2.  What is the association between local palliative care provision, and patient outcomes and costs?
     3.  What are the deficits in current routine statutory data collection?

Methods
This is a secondary data analysis project. This project will access national data from multiple government bodies and The Irish LongituDinal study on Ageing (www.tilda.ie) to address our aims.

Impact Plan
This analysis will address documented knowledge gaps on end-of-life care in Ireland and population trends. It will provide policymakers with critical information to understand current conditions, and to plan future service provisions and improvements. Our stakeholders also include practitioners, the public, patients, carers, and national and international research communities.

• Health Service Executive (HSE) National Clinical Programme in Palliative Care
• Non-Governmental Knowledge Users
• Policymakers, Practitioners
• National & International Researchers
• People with life limiting conditions and their families
• Carers
• Non-Patients & Non-Professional Carers

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