HE’S not going to make it. Call palliative care.” The instruction was given in a neutral tone, as if asking us to book a chest X-ray or get a dietetics opinion. I exhaled sharply with relief. I had been the registrar looking after the boy in the bed in front of us for over four weeks, and I was at my wits’ end.
Jason was a seven-year-old boy who had a metabolic condition that caused a slow degeneration of his brain and central nervous system. There are different variations of this disease, some more treatable than others.
Because no one knew Jason’s underlying issue, or what condition he had, he was kept on “full intervention” in the paediatric ICU while we worked to properly diagnose him. This meant that everything that was needed to keep him alive, no matter how invasive or painful, was on the table, with no effort spared in the attempt to save him.
Throughout it all, his mother, Agnes, sat quietly by Jason’s bedside, occasionally placing her hand tenderly on his forehead.
The hope was that we would discover that he had something that was reversible. But as time went on, this seemed more and more unlikely. The tests may have been equivocal, but messages from Jason’s own body couldn’t have been any clearer: it was shutting down.
While he was surrounded by doctors and nurses who all wanted what was best for him, it wasn’t working. We were making him miserable. Deep down, I knew there had to be a better way. So when the consultant suggested we contact the palliative care team (Paedspal), I was both relieved and confused.
“I didn’t know that the hospital had a palliative-care team,” I said.
“It’s new,” the consultant replied. “I
