Tuesday 28 March, 2023: The National End of Life Survey - the first national survey of end-of-life care in Ireland – gets underway today.



This survey asks people who have been bereaved, about the care provided to their loved ones in the last months and days of their life. The aim of the survey is to learn from people’s experiences of end-of-life care in order to improve the services provided both to people who are dying, and to their loved ones.



The findings of this national survey will provide valuable information on the standard of care provided at end of life, acknowledging what is working well and identifying areas where improvements are needed. Service providers such as hospitals, hospices and nursing homes will act on the findings and introduce improvements at local and national levels.



People who have been bereaved and who registered the death of a family member or friend that occurred between 1 September and 31 December 2022, will be invited to participate in the survey. They will receive an invitation letter and survey questionnaire in the post between March and May 2023. The questionnaire can be returned in the post or completed online at www.yourexperience.ie.  



The National End of Life Survey contains 110 questions on topics such as pain management, respect and dignity, emotional support, communication with healthcare staff and the provision of information.



Speaking of the launch of the survey, Minister Donnelly said: “A bereavement leaves a huge emotional loss. Knowing that your loved one had a high level of care near end of life provides some comfort during this most difficult time.



“Today, the National End of Life Survey is launched. This survey focuses on the experience of care provided to the deceased person at end of life from those closest – such as a family member, friend or relative.  



“We want to learn from people’s experience of end-of-life care – whether in the hospital, hospice, home or nursing home. I appreciate that it may be difficult and emotional for people to complete this survey but would encourage those who are invited to take part, to participate. The feedback from this survey will be used to improve services both to people who are dying and to their loved ones. This will ensure that we all have the best quality of care in the last months and days of life.”



HSE CEO, Bernard Gloster, said: “This is an important survey. It’s the first time that a national survey will be carried out on the experience of care at end of life in Ireland. We know that for bereaved families and loved ones, completing this survey may be difficult, but we are grateful to them for being willing to share their insights and experiences. It is only by listening and learning from the experiences of bereaved families and loved ones that we can bring about effective and sustainable changes.”



HIQA’s CEO Angela Fitzgerald, said: “Through this new survey, the first of its kind in Ireland, we ask people who have been bereaved, about the care provided to a family member or friend in the last months and days of their life. The loss of a loved one is a major event in the lives of bereaved friends and families. While taking part in this survey may, of course, be difficult during such a challenging period in peoples’ lives, hearing directly from those who have been bereaved is vital to the success of this survey.”



“We want to learn from people’s experiences of end-of-life care provided in hospitals, hospices, nursing homes and in the home, and to improve the services that are provided to people who are dying and to their loved ones. The responses that we receive as part of this survey will help us to ensure that the dignity of people who are dying and their loved ones will be at the centre of end-of-life care in Ireland.”



The National End of Life Survey is part of the National Care Experience Programme — a partnership between the Heath Information and Quality Authority (HIQA), the Health Service Executive (HSE) and the Department of Health.



To find out more about the National End of Life Survey, watch our animation, visit www.yourexperience.ie and follow us on Instagram, Twitter and Facebook.

Ends.

For further information please contact:

Marty Whelan, Head of Communications & Stakeholder Engagement

085 8055202

mwhelan@hiqa.ie

Notes to the editor:

• Participation is open to individuals who registered the death of a family member or friend that occurred between 1 September and 31 December 2022.
• Participation in the survey is voluntary. If participants do not think that they are the best person to complete the survey, they are encouraged to pass it on to whomever they feel knows most about the end-of-life care provided to their loved one.
• An estimated 9000 people are eligible to participate in the survey.
• The National End of Life Survey is supported by the Irish Hospice Foundation, All Ireland Institute of Hospice and Palliative Care, and Carers Ireland who are involved in the planning of the survey.
• Participant contact details were provided by the General Register Office, who keep a register of all deaths in the country. An agreement was put in place with the National Care Experience Programme to ensure that participant’s information was shared securely and only used for the purpose of the survey. This information will be deleted as soon as the survey is complete.
• More information about The National End of Life Survey can be found on the Frequently Asked Questions section of yourexperience.ie or by calling our Freephone number on 1800 314093.
• Eligible participants will receive the survey by post between March and May 2023. The completed survey must be submitted before the survey closes on 30 June 2023.
• The findings of the survey will be published on www.yourexperience.ie in early 2024.
• The HSE, in partnership with the Irish Hospice Foundation provides a helpline to support people who have experienced the death of a family member or friend. You can call this Freephone service on 1800 807077 to talk to a bereavement support volunteer. This service is available from 10am – 1pm, Monday to Friday.
• Samaritans provide emotional support for anyone who is struggling to cope or needs someone to listen to them without judgement or pressure. You can contact Samaritans 24 hours-a-day, 7 days-a-week on Freephone 116 123 or by emailing jo@samaritans.ie. For more information, please visit www.samaritans.ie.
• Bereaved people who have been impacted by any issues with regard to end-of-life care and would like information or support, or would like to provide feedback on the care provided to their loved ones, can do so by contacting the Patient Advocacy Service on 0818 293 003 or at info@patientadvocacyservice.ie. For more information, please visit patientadvocacyservice.ie.