Dr Sarah Holmes, palliative care consultant and medical director of Marie Curie Hospice Bradford, says for those who have never experienced death, caring for someone at the end of life can be daunting. Most people do not know what normal dying looks like, she says.
“When someone is right at the end of life they will move in and out of consciousness,” she says.
“I remember seeing a family who got very worried every time their loved one moved. Was that person in distress or pain? It was just that they were moving out of that deeply unconscious state. It’s normal. But the carer spent a whole night worrying about it and whether their mother was in desperate pain,” she says.
But Dr Holmes says that even before the pandemic not everyone got the support they needed at the end of life.
“And then on top of that, you’ve got this increase in the numbers of people that are accessing services at home,” she says.
Just a week before talking to the Telegraph she took a call from a GP about a dying patient who had been in hospital about a dozen times over the last few months to manage symptoms.
“So they just kept bouncing in and out of hospital and they didn’t have the care they needed at home. This is not a good situation,” she says.
The UK’s ageing population means the numbers dying are set to increase – says Irene Higginson, professor of palliative care and policy at King’s College, London.
“We’re projected to see about a 40 per cent increase in the need for palliative care between now and 2040 because of an increase in the numbers dying,” she says.
Prof Higginson also believes the shift to dying at home is set to continue – but she is concerned that currently no one really knows what the care is like for the people who have been left looking after their loved ones.
For Joanne, she would like to ensure that no one ever has to go through what her family did.
“Death’s never going to be a great experience but if it can be made as easy and as dignified as possible, then everybody is entitled to that,” she says.
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