HSE welcomes findings of the first National End of Life Survey and publishes HSE report in response to the findings

National End of Life Survey finds majority of people feel their loved ones receive very good end-of-life care in Ireland, but areas for improvement remain.

Today, the HSE welcomed HIQA’s findings of the National End of Life Survey 2023.  It is the first national survey of its kind providing important insights into patients’ end of life care experiences across Ireland.

A detailed response report, ‘Listening, Responding and Improving’ was also published by the HSE, outlining the work underway to address the issues highlighted by participants in the survey.

In total 4,570 bereaved family members and friends participated in the survey. The findings showed that almost 74% of participants rated the care that their relative or friend received at the end of their life as ‘very good’, 15% rated it as ‘good’, while 11% said that their relative received ‘fair’ to ‘poor’ care.

The survey included the experiences of people who received care or died in various settings. The most common place of death was a hospital (39.4%), followed by a nursing home, home and hospice. The people who died experienced a variety of pathways of care involving multiple care settings and services in the last months and days of their lives.

The most positive ratings of overall care at the end of life were from bereaved relatives of people who died in a hospice, with almost 94% of people rating the overall care that their relative or friend received in a hospice at the end of their life as ‘very good’.

Participants highlighted positive experiences across several areas of care, including the respect and dignity with which their relative or friend was treated and the standard of care provided by staff. The survey found that most participants had confidence and trust in the healthcare staff who were caring for their relative or friend, and felt that they explained their relative or friend’s condition and care in a way that they themselves could understand.

However, the survey also identified several areas where care could be improved. Issues that were highlighted included the continuity, availability and responsiveness of care, timeliness of care and support for emotional needs. For example, 23.9% of participants answered ‘no’ when asked if there was good coordination between the different services and staff that cared for their relative or friend in the last three months of their life.  Some participants also felt that their relative or friend did not get help from healthcare staff as soon as they needed it.

Welcoming the survey findings, Bernard Gloster, HSE CEO, said: “The death of a loved one is a very difficult time for families and friends. I’d like to thank every person who gave their time to participate in the first National End of Life Survey and share their experiences of the care their loved one received in those last precious months and days of their life.

“Improving the experience of end of life healthcare services is a key priority for us. This survey provides valuable information and important insights across our services in hospitals, hospices, nursing homes and the community. It lets us know what is working well, such as hospice care which is rated highly, and also, perhaps more importantly, the areas where we can and must improve. Our HSE detailed response report, ‘Listening, Responding and Improving’ which is also being published today, outlines the work underway to address the issues highlighted by participants in the survey findings.”

Our response report outlines how a range of quality improvements plans are already underway both at national and local levels across all care settings.

These include;

• Hospice Friendly Hospitals, a partnership with the Irish Hospice Foundation, which aims to improve of end-of-life care in acute hospitals which is underpinned by the Quality Standards for End-of-Life Care in Hospitals.
• Caru, a continuous learning quality improvement programme developed by the Irish Hospice Foundation and the All Ireland Institute of Hospice in partnership with the HSE available to all nursing home staff across Ireland.
• Care of the Deceased Guideline - all of the expected practices hospitals and care settings should follow when caring for someone who has died, is in development and due for publication later this year.
• Implementation of the Assisted Decision Making Capacity Act – to ensure everyone is supported to make their own decisions about their end-of-life care as far as possible.
• Development of three new hospices in Drogheda, Tullamore and Cavan to ensure every region in the country has access to hospice care.
• The HSE has worked in collaboration with the Department of Health and HIQA in developing design guiding principles that will align new community nursing units to national policies and standards. For patients this will mean a reduction in the use of multi-occupancy rooms and an increase in the provision of more communal social spaces, following best practice in the delivery of end of life care.

Dr Feargal Twomey, Clinical Lead, HSE/RCPI National Clinical Programme for Palliative Care, said:

‘‘As a normal part of living, dying, death and bereavement will affect each of us and those close to us at some stage. The experiences of the care that the HSE provides before and at the end of a person’s life have a huge impact on each person and those close to them, both around the time of the person’s death and during the grieving process for those who survive them.

“We welcome and support the first National End of Life Survey and the vital feedback provided by bereaved family members on the care received by the person close to them who has died.

“While it is encouraging to hear reports of the good care people received, the HSE hears the views of and acknowledges the impact on those people who had a poorer care experience. We are sorry that not every person received the care they should have.

“I can provide assurance that the HSE is developing and will continue to develop general and specialist services to ensure that into the future we will provide the best levels of palliative care, end of life and bereavement care for people who need them across all care settings.”

HIQA report of the National End of Life Survey

HSE response to the findings of the National End of Life Survey