Elderly father was denied palliative care as he wasn’t ‘actively dying’, says daughter

Angela Moore is grateful her parents died at home, but it was a battle to get the support needed to grant her father’s wish.

Sam and Anne Moore died within months of each other in 2020 and 2021 in the family house in Templeogue, Dublin, after being cared for by their daughter for 10 years.

She was speaking as the first national audit of end-of-life care showed 74pc of participants rated the care their relatives or friends received as “very good”.

Another 15pc questioned for the Health Information and Quality Authority (Hiqa) survey rated it as “good”, while 11pc said that their relative received “fair” to “poor” care.

However, almost 18pc of the bereaved said their relatives or friends did not get help from healthcare staff as soon as they needed it while being cared for, according to the first survey of its kind in Ireland.

The most common place of death was a hospital (39.4pc), followed by a nursing home, home and hospice.

4,570 bereaved family members and friends took part in the survey.

They 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.

But problems highlighted included the continuity, availability and responsiveness of care, timeliness of care and support for emotional needs.

The Hiqa survey found 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 94pc of people rating the overall care that their relative or friend received in a hospice at the end of their life as “very good”.

Angela Moore is one of those with experience of a loved one who received end-of-life care. “Dad had Parkinson’s disease and for the last four years of his life had dementia as well. He wanted to die at home,” Ms Moore said.

“About two months before he died, I asked about palliative care as I could see he was going downhill. He had become very frail and was sleeping a lot more and eating less.

“I was aware that for people with dementia an infection could change things very suddenly and dramatically.

“We didn’t need regular visits from palliative care, just somewhere I could call if something happened and more so for guidance than anything else, especially if it was over the weekend.”

Ms Moore’s father was not eligible because he was not “actively dying”, she said, but “my fear became a reality and he got ill very suddenly”.

“It was a Friday morning,” she said. “The GP said Dad had an infection and prescribed antibiotics. I was concerned about Dad’s pain levels, so our GP prescribed liquid morphine, just in case.

“During the night, Dad became very agitated and was groaning in pain. I started giving him the morphine, but it didn’t seem to help for very long.

“Suddenly, on the Sunday morning, Dad couldn’t swallow. Now I had no way to give him pain relief and I was panicking. Our only option was to call an ambulance, and Dad went to A&E alone as this was during Covid in 2020.

“If Dad had been under the care of the community palliative care team earlier, none of it would have happened.”

Ms Moore, whose mother died with Alzheimer’s, was encouraged to speak about her experience at a focus group meeting organised by the Irish Hospice Foundation.