Critical need for advance care planning in enhancing end-of-life experiences for older adults

Posted on: 19 December 2024

Little is known about the end-of-life experiences of individuals on the island of Ireland and how that differs between the north and the south. Now a new collaborative report from The Irish Longitudinal Study on Ageing (TILDA) at Trinity College Dublin and the Northern Irish Cohort for the Longitudinal Study of Ageing (NICOLA) at Queen’s University Belfast hopes to fill this void. The new report emphasises the critical need for advance care planning in enhancing end-of-life experiences for older adults. The report, "Planning for End of Life on the Island of Ireland" published today, addresses pressing health care challenges in both the North and South of the island.

Improving end-of-life care is a policy priority worldwide due to demographic ageing, and the associated shift in population health needs from predominantly acute, episodic care to ongoing supportive care of older adults living and dying with serious chronic disease. End of life care has emerged as a policy priority across Ireland, driven by documented modifiable problems and the growing health needs of the ageing population

Previous research in Ireland has shown significant scope for an improved experience for people approaching end of life and their families: from recent TILDA research, those in the last year of life widely report modifiable problems including unmanaged pain and other symptoms, falls, and repeat emergency hospital admissions.

The need to improve care and supports is compounded by growing population health needs. The number of people dying annually on the island of Ireland will increase approximately 75% over the next 25 years. This growth is mainly accounted for by the Republic of Ireland, which has a younger population than that in Northern Ireland, but needs are growing in both jurisdictions. Not only will the number of deaths increase markedly but the types of supports required will change; those aged 85+ will account for a fast-rising proportion of deaths, and prevalence of dementia as a cause of death will increase significantly.

To inform planning for care and services in both jurisdictions, we addressed a series of inter-related research questions using NICOLA and TILDA data on intensity of end-of-life care, death-preparedness and advance care planning.

Key findings include:

• Place of Death: Approximately half of all deaths occurred in hospitals in both the North and the South.
• Healthcare Use Including High-Intensity Treatments: Cancer surgeries and chemotherapy, and unplanned hospital admissions, were common in both jurisdictions but more prevalent in the South compared to the North.
• Potentially modifiable problems: Approximately half of people both North and South were often troubled by pain in the last year of life.
• Death Preparedness: The study found that having a will was more common in the South, whereas life insurance was more prevalent in the North. However, formal engagement in advance care planning was notably low in the South, and NICOLA currently does not record equivalent data for the North.The findings underline the urgent need to integrate advance care planning into healthcare systems to ensure care respects individual preferences and values. Such measures may reduce inappropriate or low-value hospital treatment and increase focus on patient-centred experience such as pain and symptom burden.

As the population ages, understanding and improving end-of-life care becomes increasingly critical. This report provides valuable insights that can inform planning for care and services across both jurisdictions, ultimately leading to better health outcomes for older adults.

Lead Author, Peter May, Research Assistant Professor in Health Economics at TILDA said:

"Advance care planning is a potentially important tool to align healthcare delivery with the values and preferences of individuals as they approach the end of life. This research provides a critical, evidence-based roadmap to guide improvements in policy and practice, with clear opportunities for care across jurisdictions on the island of Ireland."

Co-author Corrina Grimes, Visiting Research Fellow, Trinity College Dublin said:

"This commissioned work provides valuable insights into people's experiences at end of life, underscoring the importance of creating opportunities for all adults to plan for their future irrespective of their stage of life. This collaboration has also provided the opportunity for advance care planning questions from TILDA to incorporated into future waves of NICOLA. This significant all-Island study has revealed noteworthy differences between North and South, prompting important questions for both policy and practice that merit further exploration. The findings will undoubtedly contribute to our ongoing efforts to improve advance care planning across the island."

Regius Professor Rose Anne Kenny, Principal Investigator of TILDA, said:

“The combined all island studies of TILDA and Nicola afford a unique opportunity to glean insights into many aspects of the experience of ageing– ‘one island, two different health and social care systems’- including solutions for optimum end of life care. Of particular note in this report are the high numbers of unplanned hospital admissions despite most people declaring a wish to die at home, due to over reliance on acute hospital care, particularly in the South, coupled with weak primary and community care. Change will require significant shifts in resource allocation.”

Professor Bernadette McGuinness, Principal Investigator of NICOLA, said:

“This study highlights the importance of NICOLA and TILDA and the contribution both studies can make to society and policy north and south of the island. Following this report NICOLA has incorporated advance care planning questions into Wave 3, these are especially pertinent considering the UK parliamentary debate on assisted dying. Of concern are the numbers of people reporting considerable pain in the last year of life and we should now more towards addressing this issue with palliative care colleagues.”

This collaborative research from TILDA and NICOLA was commissioned by the Advance Care Planning Programme, Department of Health Northern Ireland, with contributions from Trinity College Dublin and King’s College London.

You can read the full report, ‘Planning for End of Life on the Island of Ireland: Evidence from The Irish Longitudinal Study on Ageing (TILDA) and the Northern Irish Cohort for the Longitudinal Study of Ageing (NICOLA), including detailed findings at this link:   

https://tilda.tcd.ie/publications/reports/PlanningforEndofLife/index.php

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