New Study Reveals Gaps in Palliative Care Awareness Across the Island of Ireland

  • The island of Ireland surpasses other countries in its knowledge about end-of-life care options
  • Closing the knowledge gap in local communities about the services and supports available is the main opportunity for improvement
  • Knowledge within the Republic of Ireland is ahead of Northern Ireland

8th September 2025 – Now in its 12th year, Palliative Care Week 2025 (7-13 September), led by the All Ireland Institute of Hospice and Palliative Care (AIIHPC), is urging people across the island of Ireland to become more informed about the benefits of palliative care and how to access local services and supports.

This year’s campaign, themed ‘Living for Today, Planning for Tomorrow,’ highlights how palliative care enables individuals of all ages living with life-limiting illnesses to live to the best of their abilities, whilst also supporting their families, carers and all those close to them. The campaign also underscores the importance of planning for future care preferences.

This call to action comes in response to new findings from a recent study, which identifies a significant need for improved awareness regarding available local supports across the island of Ireland.

Earlier this year, researchers from Queen’s University Belfast collaborated with AIIHPC to measure ‘death literacy’ across the island of Ireland. This is defined as “the knowledge and skills that people need to make it possible to gain access to, understand, and make informed choices about end-of-life and death care options*.” A higher rating indicates greater knowledge about local supports and how to access them for oneself, family, friends, and neighbours.

Between November 2024 and March 2025, over 400 people across the island participated in an online survey to better understand how services and support for death, dying, and bereavement can be more effectively targeted.

Karen Charnley, AIIHPC CEO, stated, “The research clearly shows that not everyone is aware of the benefits of accessing palliative care services and supports in their communities or making decisions about their own future care and that of those close to them. This is why our awareness campaign is so important each year. It’s also why we highlight the lived experience and personal stories of those who have accessed palliative care and the variety of events taking place throughout the island during the week – a marked increase on previous years, with over 100 events planned.

“But really the first step is one we can all take – simply speaking to our GPs and other health care providers to help us become better informed and close the knowledge gap, particularly around what services and supports are available in our local areas now and for our future needs.”

An Taoiseach, Micheál Martin, commented, “Access to vital services at critical times is a fundamental right. We must bridge the knowledge gap, ensuring every individual is aware of and can readily access the support and care they need, when they need it most. This is about empowering our communities and ensuring no one is left behind.”

Commenting further on closing knowledge gaps about palliative care, Dr. Feargal Twomey, Consultant in Palliative Medicine and National Clinical Lead for Palliative Care, said, “Though this study reports high levels of ‘death literacy’ in Ireland, there is no guarantee that this necessarily translates to each person with a serious illness receiving the palliative care that they need. For many of the public and the staff working in our healthcare services, the term ‘palliative care’ is often only associated with death and dying, and not also with enabling people to live as well as they can for as long as possible. I encourage the public and all healthcare professionals to ask, talk and speak up about palliative care so that our patients and their families can receive the right palliative care, in the right place, and at the right time, as soon as they need it.”

Stephanie Crawford, Researcher at Queen’s University Belfast, said, “This study offers crucial insights into the current landscape of death literacy across the island of Ireland. By identifying specific knowledge gaps, particularly around community support, we hope this research will enable a more precise and effective targeting of palliative care services, ultimately benefiting more individuals and families.”

Key findings from the study

  • Knowledge about care options:The island of Ireland surpasses other countries with its knowledge about end-of-life care options (level of death literacy), with a score of 68.1% (UK 47.6%, China 67%, Belgium 51.5%, the Netherlands 2%, Sweden 51.5%, and Australia 61.2%). In addition, the Republic of Ireland (75.8%) is ahead of Northern Ireland (67.5%) thus is better equipped to support others with end-of-life care.
  • Main area for improvement:Closing the knowledge gap in local communities about the services and supports available is the main opportunity for improvement. This area (‘Support in my community’) received the lowest score of 60.4%, with people lacking in knowledge about the services and supports for individuals with serious progressive illnesses, those nearing the end of their lives, people caring for a dying person, and those grieving.
  • Predictors of knowledge about care options:Individuals living with a life-limiting illness or those who have provided care for someone either now or in the past had significantly higher scores (72.9%) compared to those without relevant experience. This highlights the importance of learning from lived experiences and personal stories. Similarly, volunteering alongside people living with life-limiting illnesses enhances knowledge (78%) compared to those without experience in caring, relevant work, or training (53.8%).
  • Self-perception of knowledge about care options:The survey found that nearly one in three people (27.7%) overestimated their knowledge. This suggests that those who believe they have more knowledge than they really do may not seek the support and guidance they need for end-of-life, death and dying. However, encouragingly, most people (83.7%) expressed a desire to improve their knowledge.

Palliative Care Week 2025 aims to bridge these knowledge gaps by providing valuable information and encouraging conversations about palliative care across all communities. People can also find more about palliative care, including a collection of personal stories at www.thepalliativehub.com – it features helpful information about palliative care for children, adults and family carers, as well as dedicated sections for care professionals and online learning.

ENDS

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Notes to Editors:

Photo captions

  1. Launching Palliative Care Week 2025, ‘Living for Today, Planning for Tomorrow’, L-R are Fintan Fagan, Chair, AIIHPC; Karen Charnley, CEO, AIIHPC, Taoiseach Micheál Martin; Declan Moore who receives palliative care supports at St. Francis Hospice and Yvonne McCahill, Communications Manager, AIIHPC.
  2. Launching Palliative Care Week 2025, ‘Living for Today, Planning for Tomorrow’ are Taoiseach Micheál Martin and Karen Charnley, CEO, AIIHPC.
  3. Launching Palliative Care Week 2025, ‘Living for Today, Planning for Tomorrow’ is Taoiseach Micheál Martin
  4. Launching Palliative Care Week 2025, ‘Living for Today, Planning for Tomorrow’, L-R are Fintan Fagan, Chair, AIIHPC; Karen Charnley, CEO, AIIHPC, Taoiseach Micheál Martin; Declan Moore who receives palliative care supports at St. Francis Hospice and Yvonne McCahill, Communications Manager, AIIHPC.

About the online survey

  • *(Source: Leonard et al., 2020).
  • 209 people from Northern Ireland and 196 from the Republic of Ireland (405 total) answered the survey.
  • Most participants were women (79%), white (96.54%) and aged between 50-59 years old (28.9%).
  • Almost half of the sample (48.1%) had a previous experience of providing care for someone who had since died.
  • The researchers from Queen’s University Belfast used an adapted Death Literacy Index to measure ‘death literacy’ across the island of Ireland.

About palliative care

  • Palliative care can be provided in hospitals, hospices, nursing homes and in a person’s home by a wide range of health and social care professionals, including Specialist Palliative Care Teams, GPs, District Nurses and Public Health Nurses, social workers, occupational therapists, speech and language therapists, psychologists, dieticians, chaplains and more.  It puts the individual at the centre of care, supporting their physical, social, emotional and spiritual needs. It also supports their families, carers and all those close to them.
  • It is available for people at all stages of illness, as well as people of all ages from childhood to adulthood.
  • Regardless of the setting, palliative care is a team-based approach to care that helps the whole family cope with a serious illness. It can help people better understand their treatment options, improve a person’s ability to participate in daily activities, help to address any psychological issues/stress brought up by serious illness, and help people manage the side effects of their medical treatments.
  • Palliative care isn’t just for end-of-life care – it’s about helping individuals living with a life-limiting illness to live as well, and as fully as possible, today and for as long as possible.
  • Palliative care is so much more than the last days of life; it’s not exclusively for people who are in the last six months of life or for people with cancer. It focuses on symptom management from the diagnosis of a life-limiting condition onwards.

Additional information on future palliative care requirements 

Republic of Ireland

  • By 2028, more of the population will be 65+ years old than 0-14 years old (Source: HSE).
  • Currently, palliative care provision is based on need, not diagnosis, place of care or age (Source: HSE)
  • 16,000+ new referrals to Adult Acute Specialist Palliative Care (SPC) teams
  • 500/month Number of Family units receiving SPC Bereavement services
  • 123 new children received SPC by the SPC team in CHI.
  • 15250 patients received specialist palliative care services in the community

HSE National Adult Palliative Care Policy Implementation Plan 2025-2026.

About the All Ireland Institute of Hospice and Palliative Care

The All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a collaborative of hospices, health and social care organisations, universities and charities on the island of Ireland. AIIHPC’s aim, with our twenty-six member organisations, is to ensure excellent palliative care is available for everyone at the right time and place across the island of Ireland.

AIIHPC works with a group of visionary partners who recognise the value of working together to achieve a better, richer experience of palliative care for people with life-limiting conditions. The organisation’s 26 members (14 Republic of Ireland / 12 Northern Ireland) are:

Belfast Health and Social Care Trust

Dublin City University

Dublin University Trinity College

Evora Hospice Care

Foyle Hospice

Galway Hospice Foundation

Irish Hospice Foundation

Irish Cancer Society

LauraLynn Ireland’s Children’s Hospice

Marie Curie

Marymount University Hospital & Hospice

Milford Care Centre

Northern Health and Social Care Trust

Northern Ireland Hospice

Northwest Hospice

Our Lady’s Hospice & Care Services

Public Health Agency

Queen’s University Belfast

Royal College of Surgeons in Ireland

South Eastern Health and Social Care Trust

Southern Health and Social Care Trust

St. Francis Hospice

Ulster University

University College Dublin

University of Galway

Western Health and Social Care Trust

AIIHPC receives funding from a range of sources, including member organisations, the HSE, Public Health Agency, Health Research Board, and Health and Social Care R&D Division, Public Health Agency.