Ireland

‘My partner was sedated while I wasn’t there. We didn’t get to say goodbye’: One in 10 say end-of-life care fair to poor

Survey of 4,570 bereaved family members and friends found majority had confidence and trust in healthcare staff in such settings

Most people feel their loved ones receive very good end-of-life care in Ireland, according to a survey. Photograph: iStock/Getty

Jade Wilson
Thu Apr 11 2024 - 11:00

More than one in 10 people said their loved one received ‘fair’ to ‘poor’ end-of-life care, according to the first national National End of Life survey.

Bereaved people were asked in the survey, published on Thursday, about the care provided to a family member or friend in the last days and months of their lives.

While a significant majority (74 per cent) felt their loved one received ‘very good’ end-of-life care, respondents said there were areas that could be improved. Some 15 per cent rated the care provided as ‘good’, but 11 per cent said it was ‘fair’ to ‘poor’.

In total, 4,570 bereaved family members and friends participated in the survey, conducted by the National Care Experience Programme, a joint initiative of the Health Information and Quality Authority, the Health Service Executive (HSE) and the Department of Health.

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Some of the participants included comments as to how they experienced care, with a number pointing out a lack of communication as an issue.

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“I wish I could have been given more information about the end of life pain relief,” said one participant. “My partner was sedated while I wasn’t there, so we didn’t really get to say goodbye while he was conscious. I don’t think we got enough information towards the end.”

Another said: “I felt communication between doctors, nurses and myself was minimal.”

However, a majority of respondents praised the care provided and compassion shown by staff.

“If everyone receives this level of care at the end, it is to be commended. It felt like a coordinated mission by all to give my mother the most comfort and dignity during the toughest period of her life,” said one participant.

Another said: “He was treated with dignity and respect during his time. All his wishes were considered from the time he entered the [nursing home].”

The most common place of death was a hospital (39.4 per cent), followed by a nursing home, in the home and at a hospice. Those who died experienced a variety of care, involving multiple settings and services, in the last months and days of their lives.

Differences were seen in the types of deaths that took place across settings. For example, those who died in hospitals typically had shorter illnesses.

The survey found most participants had confidence and trust in the healthcare staff who were caring for their relative or friend. They felt conditions and care were explained in a way they could understand.

It also identified several areas where care could be improved with issues such as the continuity, availability and responsiveness of care; timeliness of care; and support for emotional needs highlighted.

Some 23.9 per cent of survey participants answered ‘no’ when asked if there was good co-ordination between the different services and staff that cared for their relative or friend in the last three months of their lives. Some also felt help was not provided from healthcare staff as soon as their loved one needed it.

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 per cent rating the overall care as ‘very good’.

Responding to the findings, Minister for Health Stephen Donnelly said he recognised “there are still areas for improvement, particularly in the areas of integration and co-ordination of services”.

“The findings of the survey will be used to inform department policy in improving end-of-life care for everyone”, he said.

Minister of State for Mental Health and Older People Mary Butler welcomed the findings and said the level of satisfaction in relation to nursing home care was “heartening”.

HSE chief executive Bernard Gloster 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.

“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.”

Jade Wilson

Jade Wilson

Jade Wilson is a reporter for The Irish Times

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