Marie Curie response to the NHS Benchmarking Network's National Audit of Care at the End of Life
Comment published
The NHS Benchmarking Network has today published the National Audit of Care at the End of Life (NACEL), which assesses the experience of people who die in hospitals in England and Wales, and the people important to those patients.
Responding to the report, Simon Jones, Director of Policy and Public Affairs, at the terminal illness charity Marie Curie said:
“The NACEL report is a crucial look at how hospitals are delivering end of life care. Over half a million people die every year in England and Wales and the majority of them will die in a hospital. With an ageing population we can only expect this trend to continue but in future the number of people will be much higher.
“It is imperative that hospitals change to ensure they are ready to care for dying patients well and have the time and means to support their loved ones. The report states that only half (52 percent) are providing access to specialist palliative care teams between office hours, seven days a week as a minimum – a level of care which is described as ‘adequate’. We should have greater ambitions for how we care for people when they are dying and be striving for round the clock, 24-hour access.
“It is also concerning that many people highlighted a lack of privacy, with around a third of people dying on a busy ward rather than in a quieter side room. At the same time, nearly a third of people said they didn’t have enough emotional support when their loved one was dying. Hospitals must consider how they support the loved ones of a dying person, as a lack of support can lead to distress and poor mental health for the bereaved.”
Jackie Stacey’s Mum Kathleen died of Alzheimer’s, aged 78. Kathleen spent 10 days on a busy hospital ward at the end, to the distress of her family who felt powerless to get her somewhere more peaceful.
"About three to four days before she died, we were told that she was dying. Those final days were torture at times. Mum was constantly thirsty and in a lot of distress.
"At the end, I was there for Mum. We wanted it to be a quiet time – it was very difficult. I felt the staff were intruding on a really private moment and I just wanted to be left alone with Mum in her final moments. I kept asking staff to call my family.
"Beyond the closed curtain there was so much noise – with visitors coming and going; and staff going about their rounds. It wasn’t peaceful or serene. It wasn’t nice.
"Mum deserved a dignified end, it should have been more dignified and calm."