More than half of adults don’t have enough information to make decisions about Palliative Care

Press release

4 out of 5 people in Northern Ireland think about end of life when they hear the term Palliative Care

53% of adults in Northern Ireland agree that if they needed to receive palliative care, they would not have enough information to enable them to have conversations or make decisions about their care. The finding is from a new survey of the public’s perceptions of palliative care commissioned by All Ireland Institute of Hospice and Palliative Care (AIIHPC) to highlight Palliative Care Week (11 – 17 September 2022).

The theme for the ninth annual Palliative Care Week is, ‘Palliative Care: Living as Well as Possible’ which was chosen following collaboration with AIIHPC’s partners and wider network. It reflects what palliative care is and the positive impact that palliative care has on the lives of people with life-limiting illnesses and their families; allowing them to live their lives as fully as they can.

The survey of 500 people in Northern Ireland carried out in July 2022, also highlighted some of the misconceptions that exist about palliative care.

49% of people think of cancer when they hear the term Palliative Care.

  • 80% of adults agree that when they hear the term palliative care, they think that it is about supporting the quality of life for those with life limiting conditions.
  • 47% of adults do not feel ready to have conversations or make decisions about palliative care.
  • 41% of adults would be too scared to make decisions or have these conversations if they had to receive palliative care.

AIIHPC Director, Karen Charnley, said:

“While we are encouraged to see that most people know that palliative care is about supporting someone with a life-limiting condition, we can see how important it is that during Palliative Care Week, we continue to share information about the benefits of palliative care so that people become better informed about the supports that are available, so that they do feel comfortable to have conversations and make decisions about their care.

“I am drawn to the survey finding that a high proportion of people still think of cancer when they think about palliative care. It is important to know that palliative care helps those with a range of life-limiting conditions, such as motor neurone disease, dementia, and advanced heart and lung disease.

“The week also recognises the role of all our healthcare professionals who come together to provide palliative care services and support in communities all across the island of Ireland.

This Palliative Care Week, we want to encourage you to talk to your GP or any health and social care professional about palliative care or visit thepalliativehub.com for more information and advice about palliative care”.

Marian Mawhinney, who had personal experience of palliative care services when her Mum attended Northern Ireland Hospice said,

“The palliative care that my Mum Colette received when she was diagnosed with oesophageal cancer, made a significant difference in her quality of life. With support and symptom management treatments from the health care professionals at Northern Ireland Hospice, it made us as a family feel at ease that my Mum was being taken care of. Palliative care helped my Mum overcome the fear of her diagnosis of cancer and helped her take control and manage her symptoms physically and emotionally.”

Visit www.thepalliativehub.com to find out more.

-ENDS-

For further information or to request an interview contact:

Robyn Keleghan, +353 85 800 1275 or robyn@cclinic.ie

Sarah Dunne, +353 85 853 5647 or sarahd@cclinic.ie 

Photo caption:

L-R: Joanne Morgan, Programme Manager for Education and Practice, All Ireland Institute of Hospice and Palliative Care; Marian Mawhinney, personal experience spokesperson for palliative care services and Heather Weir, CEO of the Northern Ireland Hospice.

Video- Marian Mawhinney experience at NI Hospice

Infographic on perceptions of palliative care

Notes to Editors:

  • *iReach survey of 500 people in Northern Ireland conducted in July 2022
  • Karen Charnley, AIIHPC Director, is available for interviews
  • Palliative care is delivered by a wide range health and social professionals including doctors, nurses, social workers, occupational therapists, speech and language therapists, psychologists, dieticians, chaplains and more.

Additional Information on Palliative Care Requirements:

  • Evidence suggests that between 75% and 80% of people who die have conditions that would benefit from some palliative care services, with the potential to support their quality of life for weeks, months and years.
  • The need for palliative care is increasing across the island of Ireland. The number of people dying in Northern Ireland over 25-years from 2016 to 2041 is projected to increase by 32 per cent (from 15,300 to 20,300) – NISRA Statistical Bulletin (October 2017).
  • In Northern Ireland, estimated 45% increase in people dying with a palliative care need between 2018 and 2040
  • It is estimated anywhere between 100-150K people in NI are currently living with progressive and non-curative conditions (in their last years of life).

About All Ireland Institute of Hospice and Palliative Care:

All Ireland Institute of Hospice and Palliative Care (AIIHPC) is a collaborative of hospices, health and social care organisations and universities on the island of Ireland. AIIHPC advances education, research and practice to improve the palliative care experience of people with life-limiting conditions and their families.

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 partners (15 Republic of Ireland / 11 Northern Ireland) are:

An Roinn Sláinte / Department of Health

Belfast Health and Social Care Trust

Dublin City University

Dublin University Trinity College

Galway Hospice Foundation

Irish Hospice Foundation

Lauralynn Children’s Hospice

Macmillan Cancer Support NI

Marie Curie

Marymount University Hospital & Hospice

Milford Care Centre

National University of Ireland Galway

Northern Health and Social Care Trust

Northern Ireland Hospice

North West Hospice

Our Lady’s Hospice & Care Services

Public Health Agency

Queen’s University Belfast

South Eastern Health and Social Care Trust

Southern Health and Social Care Trust

St. Francis Hospice

Ulster University

University College Cork

University College Dublin

Waterford Institute of Technology

Western Health and Social Care Trust.

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