Talking honestly about end-of-life care

Photograph: Tara Todras-Whitehill/AP

I was deeply moved by Rachel Clarke’s article (‘All that is good in human nature is here’, Review, 18 January). My mother – a sparkly 73-year-old who sang and climbed mountains – died of pancreatic cancer last year, and I wish she’d encountered someone like Rachel.

We’d known Mum wanted to be at home when she died, but nobody talked about what this might involve. When Mum declined rapidly, we were not prepared. How do you hydrate an unconscious patient? How do they go to the toilet? Seeing Mum on the sofa, a nurse mentioned we could’ve booked a hospital bed. It arrived on Dad’s doorstep two weeks too late.

Then there was the pain. Overnight Mum became unable to take her pills, so we waited for intravenous pain relief to be signed off by the same GP who’d dismissed Mum’s cancer symptoms. For after-hours support, we were told to call 111. Each time, they asked the same questions about Mum’s illness and whether this was an emergency.

We were frazzled, exhausted, certain we were doing everything wrong. Finally a lovely GP really talked to us about what was going on, and what might happen next. We transferred Mum to a hospice, where we could just be with her. Twelve hours later she died.

Overall, Mum’s death was peaceful. We ate dinner around her as she lay unconscious in the bed we’d cobbled together out of a garden recliner. We sang and read her stories. But during those midnight hours, we felt helpless.

Most of us want to die at home, but a terminal patient might not know what this involves, or even what to ask. We need more people like Rachel to start those conversations.
Kathryn Price
St Albans, Hertfordshire

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