The National End of Life Survey is a nationwide survey asking bereaved relatives about the care provided to their loved ones in the last months and days of their life. The purpose 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 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.
Individuals who registered the death of a family member or friend that occurred between 1 September and 31 December 2022, are being invited to participate in the survey and will receive a survey pack in the post between March and May 2023.
The National End of Life Survey asks bereaved relatives about the end-of-life care provided to their loved ones in hospices, nursing homes, hospitals and in the home. Sudden, maternal and child deaths are not included in the survey, as the care pathways in these circumstances are different.
Eligible participants will receive an invitation letter and a survey questionnaire in the post. The questionnaire takes around 30 minutes to complete and can be returned in the enclosed Freepost envelope.
Yes, you may complete the survey online at survey.yourexperience.ie. Log on using your unique survey code, which can be found on your questionnaire or in the top right-hand corner of the invitation letter.
Your responses will provide us with important information on end-of-life care in Ireland. This will help us to identify what works well and what needs to be improved.
Participation in the survey is voluntary. If you do not think that you are the best person to complete the survey, please pass it on to whomever you feel knows most about the care provided to your loved one. Alternatively, if you do not wish to take part, you can let us know by returning the blank questionnaire in the Freepost envelope provided, by calling our Freephone number on 1800 314093 or by emailing us at email@example.com.
The survey includes questions on pain management, respect and dignity, emotional support, communication with healthcare staff and the provision of information.
All survey responses will be combined to produce a report on experiences of end-of-life care in Ireland, which will be published on www.yourexperience.ie. The information we get from this survey will help improve the quality of care at end of life provided in Ireland. Service providers such as hospitals, hospices, nursing homes and the HSE will act on the findings and introduce improvements at local and national levels.
Yes, please do. We want to hear about all experiences of care at end of life — good and bad — so that we can get an accurate picture of the standard of end-of-life care and services in Ireland.
Yes. Your answers will be processed in strict confidence and kept separate from your contact details. Anonymised responses will be retained solely for analysis; they will not be given to commercial entities or used for commercial purposes.
Yes. The National End of Life Survey complies with data protection laws including the General Data Protection Regulation (GDPR) and Data Protection Act 2018. Your contact details will be used for the sole purpose of sending you the survey. Further details can be found at yourexperience.ie.
Your 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 between the National Care Experience Programme to ensure that your information was shared securely and only used for the purpose of the survey. Your information will be deleted as soon as the survey is complete.
We appreciate how painful it may be to consider the questions in this survey. 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 80 70 77 to talk to a bereavement support volunteer or access support through the website www.bereaved.ie. The Freephone service is available from 10am to 1pm, Monday to Friday.
More information is available on our website yourexperience.ie. You can also ring our Freephone number on 1800 314093 (Monday – Friday, 9am – 5pm), email us at firstname.lastname@example.org, or write to us at:
The National End of Life Survey
c/o Health Information and Quality Authority (HIQA)
George’s Court, George’s Lane
Dublin 7/D07 E98Y